PREVENT-HD INVITES VOLUNTEERS…
To participate in a research study to help develop and refine the tools that can be used in clinical trials to measure the effectiveness of treatment before the disease impacts daily life. We want to build a case for testing these treatments much earlier in people at risk for HD. Starting treatment sooner may help delay the start of symptoms or slow down the progression of the disease. Some scientists think that treatments may be more likely to work when the brain is still healthy, rather than later in the disease when many brain cells are gone.
We want to plan for future clinical trials by finding and tracking subtle but measurable changes in behavior, cognition, and emotional responses that occur before the more visible HD symptoms appear.
Location of Study: University of Wisconsin-Madison
We are currently enrolling adults from HD families. This includes:
- People who have been gene tested for HD, who carry or do not carry the HD gene
- People who have recently been diagnosed with HD and are in the very early stages of the disease
- People who are gene-positive, but are not currently showing any symptoms (pre-symptomatic)
WHEN YOU ENROLL IN PREVENT-HD, YOU WILL:
- Complete movement, behavioral, and cognitive tasks
- Answer some questions about your quality of life
- Undergo a lumbar puncture to collect cerebral spinal fluid (CSF)
- Get a brain scan using imaging tools
You will be paid for participating in this study, and we will cover all travel and hotel costs. The study will take roughly five hours to complete over the course of two days.
The measures of motor, thinking, feeling, and functioning skills will take roughly two hours. If you choose to participate in CSF collection, you will return after overnight fasting to have this done the next day. The CSF will take about 2 hours, including allowing an hour of rest. The brain scan will take one hour.
We would like to invite you to join the Huntington’s disease (HD) registry at the University of Wisconsin-Madison. By enrolling in the registry your name will be added to a list of people who are interested in participating in HD research studies. With this registry, we hope to increase the understanding of this disease and discover new ways of treating it.
Please visit: https://is.gd/uwmadisonhdregistry
HISTORY BEHIND PREVENT-HD (FORMERLY KNOWN AS PREDICT-HD)
Our team built one of the largest studies to detect and track the earliest signs of Huntington’s Disease (HD). The study was submitted to the NIH in 1999 by members of the Huntington Study Group. PREDICT-HD was funded by five investigator-initiated RO1 grants and sixteen collaborative UO1 grants from the NIH. CHDI also provided funds to expand the research outside of North America and develop the TRACK studies. We connected with over 1,485 participants who are at risk for HD all around the world. This Team Science included over 485 staff and faculty scientists from institutions around the world. We published over 180 peer-reviewed papers in professional journals, and we have shared data, biological samples and brain imaging data with other scientists willing to help us learn more about HD. Our ongoing follow-up study, PREVENT-HD, continues to lay the groundwork for clinical trials testing new HD therapies in at-risk participants.
Jane Paulsen is a Professor of Neurology with tenure at the University of Wisconsin–Madison. She was previously the Roy J. Carver Chair in Neurosciences at the University of Iowa, and began her academic career in the Departments of Psychiatry and Neurosciences at UCSD. Her career interests include Huntington’s Disease and vascular dementia research.
Kerry Ludke is a Research Program Manager in the Paulsen Lab at the University of Wisconsin–Madison. She graduated from UW-La Crosse with a BS in Psychology and continued her education in UW–Whitewater’s MBA program. She brings to the Paulsen Lab over 20 years of UW–Madison administrative knowledge and skills. She is honored to support the Paulsen Lab’s efforts to lay the groundwork for new HD and CADASIL therapies and the advancement of future medical care.
Amy Hawley is a Research Program Manager in the Paulsen Lab at the University of Wisconsin-Madison. She graduated from Miami University in Ohio with a BA in Anthropology. She brings to the Paulsen Lab over 16 years of human subjects research management.
Elizabeth Penziner is a Rare Disease Research Project Manager in the Department of Neurology at the University of Wisconsin–Madison. She has degrees in Health Promotion and Public Health and has been involved in genetic research throughout her career. Her work, under Dr. Paulsen’s direction in Huntington’s Disease at the University of Iowa, has been published and presented internationally. Current projects include PREVENT-HD and CADASIL, studies of Huntington’s Disease and vascular dementia.
Natalie Minix is a Research Project Manager II in the Paulsen Lab at the University of Wisconsin-Madison. She holds a bachelor’s degree in psychology from UW-Madison and a master’s degree in neuroscience from the University of Freiburg. As a member of Dr. Paulsen’s lab, she is excited to build on her academic background and learn more about Huntington’s Disease and CADASIL. Her research interests focus on utilizing neuroimaging to better understand the neural bases of psychiatric disorders, and she ultimately hopes to pursue a doctorate degree in clinical psychology. In her free time, Natalie enjoys cooking, yoga, trail running, and traveling.
Deven Burks is a Researcher II in the Paulsen Lab at the University of Wisconsin–Madison. He holds a doctorate from the University of Luxembourg and the Catholic University of Louvain with a background in practical philosophy and social science. With the Paulsen Lab, Deven looks forward to working with the communities in Huntington’s Disease, CADASIL, and other rare neurodegenerative diseases to advance research on ethical issues, such as returning study data to participants, genetic testing disclosure, genetic discrimination, and decision-making about therapeutic interventions. In his free time, Deven enjoys creative writing, endurance sports, and cooking.
Jenna Spring is an Outreach Program Coordinator in the Paulsen Lab at the University of Wisconsin–Madison. She recently graduated from the University of Wisconsin-Eau Claire with a degree in Communication Science and Disorders and a certificate in Child Welfare. She is excited to be part of Dr. Paulsen’s lab and learn how to help people affected by Huntington’s Disease and CADASIL. Her research interests include communication disorders and dementia. In the future, she plans to pursue a Masters in Speech-Language Pathology. In her free time, she enjoys camping, traveling, skiing, and thrift shopping.
Abigail Key is a Clinical Research Coordinator in the Paulsen Lab at the University of Wisconsin–Madison working on the PREVENT-HD and CADASIL studies. She recently graduated from Lafayette College with a degree in Neuroscience. Her research interests include aging-related neurological conditions, neurodevelopmental disorders, movement disorders, and mental health conditions. She plans to pursue a PhD in Clinical Neuropsychology. In her free time, she enjoys running, reading, and embroidery.
Alex Pinto works in the Department of Biostatistics and Medical Informatics (BMI) at the University of Wisconsin–Madison School of Medicine and Public Health (UW SMPH). He currently collaborates with the Paulsen Lab as a Biostatistician on the CADASIL and PREVENT-HD studies. He brings to the lab over a decade of medical research expertise.
Ivan Griego is a Clinical Research Project Coordinator at TReNDS Center at Georgia State University (GSU). He collaborates with the Paulsen Lab on the PREVENT-HD study and the CADASIL Consortium at University of Wisconsin–Madison. He is also a Training Liaison, a data entry specialist, and a CRF/SOP author for the CADASIL Consortium. In his free time, Ivan likes to play video games and travel.
Taylor Vander Groef is an Undergraduate Research Assistant at the Paulsen Lab, where she is actively engaging in the PREVENT-HD and CADASIL Consortium studies. Currently a sophomore at the University of Wisconsin-Madison, Taylor is pursuing a B.S. in Biology with certificates in Environmental Studies and Global Health. She loves gaining knowledge and experience through her time at the Paulsen Lab. It has inspired her own research interests regarding the ethics of disclosing an early diagnosis of neurodegenerative disorders, such as Huntington’s disease. In the future, she hopes to become a Physician Assistant. Outside of her academic pursuits, she enjoys running, snowboarding, attending concerts, and traveling.
Rachel Disher is an Undergraduate Research Assistant in the Paulsen Lab at the University of Wisconsin–Madison. She is majoring in Biochemistry and earning certificates in Gender & Women’s Studies and Archaeology. She plans to study and practice neurology in the future as a physician. Her research interest is treatment development for neurodegenerative diseases. In her free time, she enjoys cooking, music, and being outdoors.
Micah Roby is an Undergraduate Research Assistant in the Paulsen Lab, currently earning her degree in Neurobiology at the University of Wisconsin–Madison. Working with the PREVENT-HD and CADASIL studies, she is interested and eager to learn more about providing support for people with Huntington’s Disease and the use of neuroimaging to assess and better understand disorders with neurological development. In her free time, Micah enjoys traveling, reading, ceramics, or other art media.
The following links are a select collection of online information about Huntington disease.
University of Wisconsin-Madison Huntington’s Disease Society of America Center of Excellence
One of 55 COEs in the United States.
HD Organizations
Huntington’s Disease Society of America
Provides vital support, information and educational services to improve the lives of those affected by HD. Includes state and local chapters.
A national network of volunteers and professionals united in the fight against HD.
Huntington’s Disease Association
A UK charity which supports people affected by HD.
HD Community
Huntington’s Disease Lighthouse Families
A website for HD families, by HD families, providing first-hand accounts of of HD family life, information about advocacy efforts and events, and explaining the latest research findings so HD families can become proactive in their care, have hope for the future and make good decisions in the present.
Huntington’s Disease Lighthouse Families Message Board
A message board serving as a 24 hour-a-day, 7-day-a-week support group meeting for families impacted by HD.
PREVENT-HD and CADASIL at Paulsen Research Lab, UW-Madison.
Online community featuring information about events, photos, articles about HD in the news, updates about research studies and calls to action and advocacy.
Huntington’s Disease Youth Organization (HDYO)
HDYO provides support for young people around the world impacted by HD. Its website contains content written by young people, for young people on a variety of topics important to kids, teens, young adults and parents.
Young People Affected by Huntington’s Disease
A chapter of the Huntington Society of Canada that provides a community and support network for youth affected by HD.
This group for young people offers support, encouragement, friendship and hope that they won’t have to battle this disease anymore when they are older.
HD Research
A site founded by Dr. Ed Wild and Dr. Jeff Carroll dedicated to the rapid dissemination of high-quality HD research news to the global community. Scientists and clinicians write easy-to-understand articles in plain language about the latest HD research from around the globe.
External links provide additional information about HD and related topics. PREVENT-HD cannot attest to the accuracy of information provided by these links.
A major goal of PREVENT-HD and its predecessor PREDICT-HD is to get research findings out to the public as quickly as possible. To that end, we are always thinking of topics that we can write an article about in order to get our findings published in medical journals. Researchers also travel around the world to present PREVENT-HD and PREDICT-HD findings at medical conferences and other venues.
Below is a listing of published articles reporting findings from PREDICT-HD, as well as a listing of PREDICT-HD presentations. Articles reporting findings from PREVENT-HD will be added as these appear in medical journals. When possible, a link has been provided to an article summary or full text of the article.
We’re also working on providing easy-to-read summaries of selected published articles, so you can get an overview of the study findings that we’ve published. Click here for more information and an archive of existing summaries.
Manuscripts Published with PREDICT-HD Cohort or Subsamples
STUDY-WIDE
Genetic Modifiers of Huntington’s Disease (GeM-HD) Consortium (2019). CAG repeat not polyglutamine length determines timing of Huntington’s disease onset. Cell, 178(4), 887-900 | Full article
Westervelt, H.J., Bernier, R.A., Faust, M., Gover, M., Bockholt, H.J., Zschiegner, R., Long, J.D., Paulsen, J.S., & PREDICT-HD Investigators and Coordinators of the Huntington Study Group. (2017). Data quality assurance and control in cognitive research: Lessons learned from the PREDICT‐HD study. International Journal of Methods in Psychiatric Research, 26(3), e1534 | Full article
Schultz, J.L., Kamholz, J.A., Moser, D.J., Feely, S.M., Paulsen, J.S., & Nopoulos, P.C. (2017). Substance abuse may hasten motor onset of Huntington disease: Evaluating the Enroll-HD database. Neurology, 88(9), 909-915 | Full article
Biglan, K.M., Shoulson, I., Kieburtz, K., Oakes, D., Kayson, E., Paulsen, J.S., … & Penney, J. (2016). Clinical-Genetic associations in the prospective Huntington at risk observational study (PHAROS): implications for clinical trials.JAMA Neurology, 73(1), 102-110 | Full article
Panegyres, P.K., Shu, C.C., Chen, H.Y., & Paulsen, J.S . (2015). Factors influencing the clinical expression of intermediate CAG repeat length mutations of the Huntington’s Disease gene.Journal of Neurology, 262(2), 277-284 | Full article
Long, J.D., Paulsen, J.S., and the PREDICT-HD Investigators and Coordinators of the Huntington Study Group (2015). Multivariate prediction of motor diagnosis in Huntington’s disease: 12 years of PREDICT-HD. Movement Disorders, 30(12), 1664-1672 | Full article
Genetic Modifiers of Huntington’s Disease (GeM-HD) Consortium (2015). Identification of Genetic Factors that Modify Clinical Onset of Huntington’s Disease. Cell, 162(3): 516-526 | Full article
Paulsen, J.S., Long, J.D., Ross, C.A., Harrington, D.L., Erwin, C.J., Williams, J.K., Westervelt, H.J., Johnson, H.J., Aylward, E.H., Zhang, Y., Bockholt, H.J., Barker, R.A., and the PREDICT-HD Investigators and Coordinators of the Huntington Study Group (2014). Prediction of manifest Huntington’s disease with clinical and imaging measures: a prospective observational study. Lancet Neurology, 13(12):1193-1201 | Full article
Paulsen, J.S., Long, J.D., Johnson, H.J., Aylward, E.A., Ross, C.A., Williams, J.K., Nance, M.A., Erwin, C.J., Westervelt, H.J., Harrington, D.L., Bockholt, H.J., Zhang, Y., McCusker, E.A., Chiu, E.M., Panegyres, P.K., and the PREDICT-HD Investigators and Coordinators of the Huntington Study Group (2014). Clinical and biomarker changes in premanifest Huntington disease show trial feasibility: a decade of the PREDICT-HD study. Frontiers in Aging Neuroscience, 6:78 | Easy-to-understand summary | Full article (free)
Ross, C.A., Aylward, E.H., Wild, E.J., Langbehn, D.R., Long, J.D. Warner, J.H., Scahill, R.I., Leavitt, B.R., Stout, J.C., Paulsen, J.S., Reilmann, R., Unschuld, P.G., Wexler, A., Margolis, R.L., Trabrizi, S.J. (2014). Huntington disease: natural history, biomarkers and prospects for therapeutics. Nature Reviews Neurology, 10:204-216 | Full article
Biglan, K.M., Zhang, Y., Long, J., Geschwind, M., Kang, G., Killoran, A., Lu, W., McCusker, E., Mills, J.A., Raymond, L.A., Testa, C., Wojcieszek, J. & Paulsen, J.S. (2013). Refining the diagnosis of Huntington disease: The PREDICT-HD study. Frontiers in Aging Neuroscience, 5 (12) | Easy-to-understand summary | Full article (free)
Paulsen, J.S. & Long, J.D. (2012). Neurodegenerative disease: establishing a clinical trial battery for Huntington disease. Nature Reviews Neurology, 8, 250-251 | Full article (free)
Paulsen JS. Early detection of Huntington’s disease. Future Neurology. 2010 Jan;5(1):85-104 | Full article (free)
Paulsen JS, Langbehn DR, Stout JC, Aylward E, Ross CA, Nance M, et al. Detection of Huntington’s disease decades before diagnosis: the PREDICT-HD study. J Neurol Neurosurg Psychiatry. 2008 Aug;79(8):874-80 | Easy-to-understand summary | Full article (free)
Wild EJ, Tabrizi SJ. Predict-HD and the future of therapeutic trials. Lancet Neurology. 2006 Sep;5(9):724-5 | Full article
COGNITIVE
Lee, J. M., Huang, Y., Orth, M., Gillis, T., Siciliano, J., Hong, E., Mysore, J.S., Lucente, D., Wheeler, V.C., Seong, I.S., McLean, Z.L, Mills, J.A., McAllister, B., Lobanov, S.V., Massey, T.H., Ciosi, M., Landwehrmeyer, G.B., Paulsen, J.S., … & Gusella, J. (2022). Genetic modifiers of Huntington’s disease differentially influence motor and cognitive domains.The American Journal of Human Genetics, 109(5), 885-899 | Full article
Zhang, Y., Zhou, J., Gehl, C.R., Long, J.D., Johnson, H., Magnotta, V.A., … & Paulsen, J.S. (2021). Mild Cognitive Impairment as an Early Landmark in Huntington’s. Frontiers in Neurology, 12, 678652 | Full article
Carlozzi, N.E., Boileau, N.R., Paulsen, J.S., Downing, N.R., Ready, R., Perlmutter, J.S., … & Lai, J.S. (2020). Psychometric properties and responsiveness of Neuro-QoL cognitive function in persons with Huntington disease (HD). Quality of Life Research, 29(5), 1393-1403 | Full article
Carlozzi, N. E., Boileau, N. R., Roché, M. W., Ready, R. E., Perlmutter, J. S., Chou, K. L., … & Paulsen, J. S. (2020). Responsiveness to change over time and test-retest reliability of the PROMIS and Neuro-QoL mental health measures in persons with Huntington disease (HD). Quality of Life Research, 29(12), 3419-3439 | Full article
Ellis, N., Tee, A., McAllister, B., Massey, T., McLauchlan, D., Stone, T., Correia, K., Loupe, J., Kim, K. H., Barker, D., Hong, E. P., Chao, M. J., Long, J. D., Lucente, D., Vonsattel, J., Pinto, R. M., Elneel, K. A., Ramos, E. M., Mysore, J. S., Gillis, T., Wheeler, V.C., Medway, C., Hall, L, Kwak, S., Sampaio, C., Ciosi, M., Maxwell, A., Chatzi, A., Monckton, D.G., Orth, M., Landwehrmeyer, G.B., Paulsen, J.S, … & Holmans, P. (2020). Genetic risk underlying psychiatric and cognitive symptoms in Huntington’s disease. Biological Psychiatry, 87(9), 857-865 | Full article
Carlozzi, N.E., Schilling, S., Kratz, A.L., Paulsen, J.S., Frank, S., & Stout, J.C. (2018). Understanding patient-reported outcome measures in Huntington disease: at what point is cognitive impairment related to poor measurement reliability? Quality of Life Research, 27(10), 2541-2555 | Full article
Lai, J.S., Goodnight, S., Downing, N.R., Ready, R.E., Paulsen, J.S., Kratz, A.L., … & Russell, J. (2018). Evaluating cognition in individuals with Huntington disease: Neuro-QoL cognitive functioning measures. Quality of Life Research, 27(3), 811-822 |Full article
Paulsen, J.S., Miller, A.C., Hayes, T., & Shaw, E. (2017). Cognitive and Behavioral Changes in Huntington Disease before Diagnosis.SPEC Handbook of Clinical Neurology, 144, 69-91 | Full article
Beglinger, L.J., Adams, W.H., Fiedorowicz, J.G., Duff, K., Langbehn, D., Biglan, K., … & Paulsen, J.S., (2015). Practice effects and stability of neuropsychological and UHDRS tests over short retest intervals in Huntington disease.Journal of Huntington’s Disease, 4(3), 251-260 | Full article
Musso, M., Westervelt, H. J., Long, J. D., Morgan, E., Woods, S. P., Smith, M. M., Lu, W., Paulsen, J. S., and the PREDICT-HD Investigators and Coordinators of the Huntington Study Group (2015). Intra-individual Variability in Prodromal Huntington Disease and Its Relationship to Genetic Burden. Journal of the International Neuropsychological Society, 21(1):8-21. | Full article
Paulsen, J. S., Long, J. D. (2014). Onset of Huntington’s disease: Can it be purely cognitive? Movement Disorders, 29(11):1342-50. | Full article
Williams, J. K., Kim, J., Downing, N., Farias, S., Harrington, D. L., Long, J. D., Mills, J. A., Paulsen, J. S., & the PREDICT-HD Investigators and Coordinators of the Huntington Study Group (2015). Everyday Cognition in Prodromal Huntington Disease. Neuropsychology, 29(2): 255-67 | Full article (free)
Harrington, D.L., Liu, D., Smith, M.M., Mills, J.A., Long, J.D., Aylward, E.H., Paulsen, J.S., and the PREDICT-HD Investigators and Coordinators of the Huntington Study Group. (2014). Neuroanatomical correlates of cognitive functioning in prodromal Huntington disease. Brain and Behavior, 4(1):28-40. | Full article (free)
Paulsen, J.S., Smith, M.M., Long, J.D. & the PREDICT-HD Investigators and Coordinators of the Huntington Study Group. (2013). Cognitive decline in prodromal Huntington Disease: Implications for clinical trials. J Neurol Neurosurg Psychiatry, 84(11):1233-1239. | Full article (free)
Bonner-Jackson, A., Long, J. D., Westervelt, H., Tremont, G., Aylward, E., Paulsen, J. S. & The PREDICT-HD Investigators and Coordinators of the Huntington Study Group. (2013). Cognitive Reserve and Brain Reserve in Prodromal Huntington’s Disease. J Int Neuropsychol Soc, 1-12 | Easy-to-understand summary | Full article (free)
Papp KV, Snyder PJ, Mills JA, Duff K, Westervelt HJ, Long JD, Lourens S and Paulsen JS (2012). Measuring executive dysfunction longitudinally and in relation to genetic burden, brain volumetrics, and depression in prodromal Huntington disease. Archives of Clinical Neuropsychology, 28(2):156-168 | Full article (free)
Smith MM, Mills JA, Epping EA, Westervelt HJ, Paulsen JS and the PREDICT-HD Investigators of the Huntington Study Group (2012). Depressive symptom severity is related to poorer cognitive performance in prodromal Huntington disease. Neuropsychology, Vol. 26(5), Sept. 2012, 664-669 | Full article (free)
Harrington, D.L., Smith, M.M., Zhang, Y., Carlozzi, N.E., Paulsen, J.S., and the PREDICT-HD Investigators of the Huntington Study Group. Cognitive domains that predict time to diagnosis in prodromal Huntington disease. The Journal of Neurology, Neurosurgery, and Psychiatry, 83(6):612-619. | Easy-to-understand summary | Full article (free)
Stout JC, Paulsen JS, Queller S, Solomon AC, Whitlock KB, Campbell JC, et al. (2011). Neurocognitive signs in prodromal Huntington disease. Neuropsychology, 25(1), 1-14 | Full article (free)
O’Rourke JJF, Beglinger LJ, Smith MM, Mills J, Moser DJ, Rowe KC, et al. (2011). The Trail Making Test in Prodromal Huntington Disease: Contributions of Disease Progression to Test Performance. J Clin Exp Neuropsychol, 33(5), 567-579 | Full article (free)
Vaccarino AL, Sills T, Anderson KE, Borowsky B, Craufurd D, Giuliano J, et al. (2011). Assessment of Cognitive Symptoms in Prodromal and Early Huntington Disease [Internet]. Version 111. PLoS Currents: Huntington Disease | Full article (free)
Carlozzi NE, Stout JC, Mills JA, Whitlock KB, Solomon AC, Queller S, et al. (2011). Estimating premorbid IQ in the prodromal phase of a neurodegenerative disease. The Clinical Neuropsychologist, 25(5), 757-777 | Full article (free)
Duff K, Paulsen JS, Mills J, et al. Mild cognitive impairment in preclinical Huntington disease. Neurology, 2010;75:500-507 | Full article (free)
Rowe K, Paulsen JS, Langbehn D, et al. Self-paced timing detects and tracks change in prodromal Huntington disease. Neuropsychology, 2010;24(4):435-42 | Easy-to-understand summary | Full article (free)
Solomon AC, Stout JC, Johnson SA, Langbehn DR, Aylward EH, Brandt J, et al. Verbal episodic memory declines prior to diagnosis in Huntington’s disease. Neuropsychologia. 2007 Apr 9;45(8):1767-76 | Full article (free)
Johnson SA, Stout JC, Solomon AC, Langbehn DR, Aylward EH, Cruce CB, et al. Beyond disgust: impaired recognition of negative emotions prior to diagnosis in Huntington’s disease. Brain. 2007 Jul;130(Pt 7):1732-44 | Full article (free)
Paulsen JS, Zhao H, Stout JC, Brinkman RR, Guttman M, Ross CA, et al. Clinical markers of early disease in persons near onset of Huntington’s disease. Neurology. 2001 Aug 28;57(4):658-62 | Full article
PSYCHIATRIC
Carlozzi, N. E., Boileau, N. R., Roché, M. W., Ready, R. E., Perlmutter, J. S., Chou, K. L., … & Paulsen, J. S. (2020). Responsiveness to change over time and test-retest reliability of the PROMIS and Neuro-QoL mental health measures in persons with Huntington disease (HD). Quality of Life Research, 29(12), 3419-3439 | Full article
Ellis, N., Tee, A., McAllister, B., Massey, T., McLauchlan, D., Stone, T., Correia, K., Loupe, J., Kim, K. H., Barker, D., Hong, E. P., Chao, M. J., Long, J. D., Lucente, D., Vonsattel, J., Pinto, R. M., Elneel, K. A., Ramos, E. M., Mysore, J. S., Gillis, T., Wheeler, V.C., Medway, C., Hall, L, Kwak, S., Sampaio, C., Ciosi, M., Maxwell, A., Chatzi, A., Monckton, D.G., Orth, M., Landwehrmeyer, G.B., Paulsen, J.S, … & Holmans, P. (2020). Genetic risk underlying psychiatric and cognitive symptoms in Huntington’s disease. Biological Psychiatry, 87(9), 857-865 | Full article
Misiura, M.B., Ciarochi, J., Vaidya, J., Bockholt, J., Johnson, H.J., Calhoun, V.D., Paulsen, J.S., & Turner, J.A. (2019). Apathy is related to cognitive control and Striatum volumes in prodromal Huntington’s disease. Journal of the International Neuropsychological Society, 25(5), 462-469 | Full article
Wesson, M., Boileau, N.R., Perlmutter, J.S., Paulsen, J.S. , Barton, S.K., McCormack, M.K., & Carlozzi, N.E. (2018). Suicidal ideation assessment in individuals with premanifest and manifest Huntington disease. Journal of Huntington’s Disease, 7(3), 239-249 |Full article
Paulsen, J.S., Miller, A.C., Hayes, T., & Shaw, E. (2017). Cognitive and Behavioral Changes in Huntington Disease before Diagnosis.SPEC Handbook of Clinical Neurology, 144, 69-91 | Full article
Epping, E.A., Kim, J.I., Craufurd, D., Brashers-Krug, T.M., Anderson, K.E., McCusker, E., Luther, J., Long, J.D., Paulsen, J.S., and the PREDICT-HD Investigators and Coordinators of the Huntington Study Group (2016). Longitudinal Psychiatric Symptoms in Prodromal Huntington’s Disease: A Decade of Data. American Journal of Psychiatry, 173(2), 187-192 | Full article
Kim, J.I., Long, J.D., Mills, J.A., McCusker, E., Paulsen, J.S., and the PREDICT-HD Investigators and Coordinators of the Huntington Study Group (2015). Multivariate Clustering of Progression Profiles Reveals Different Depression Patterns in Prodromal Huntington disease. Neuropsychology, 29(6), 949 | Full article
Epping, E.A., Mills, J.A., Beglinger, L.J., Fiedorowicz, J.G., Craufurd, D., Smith, M.M., Groves, M., Bijanki, K.R., Downing, N., Williams, J.K., Long, J.D., Paulsen, J.S. (2013). Characterization of depression in prodromal Huntington disease in the neurobiological predictors of HD (PREDICT-HD) study. Journal of Psychiatric Research, 47(10):1423-1431 | Full article (free)
Rowe, K.C., Paulsen, J.S., Langbehn, D.R, Wang, C., Mills, J., Beglinger, L.J., et al. (2012). Patterns of serotonergic antidepressant usage in prodromal Huntington disease. Psychiatry Research, 196 (2-3), 309-314 | Easy-to-understand summary | Full article (free)
Vaccarino AL, Sills T, Anderson KE, Borowsky B, Coccaro E, Craufurd D, et al. (2011). Assessing Behavioural Manifestations Prior to Clinical Diagnosis of Huntington Disease: “Anger and Irritability” and “Obsessions and Compulsions” [Internet]. Version 141. PLoS Currents: Huntington Disease | Full article (free)
Vaccarino AL, Sills T, Anderson KE, Bachoud-Lévi A, Borowsky B, Craufurd D, et al. (2011). Assessment of Depression, Anxiety and Apathy in Prodromal and Early Huntington Disease [Internet]. Version 94. PLoS Currents: Huntington Disease | Full article (free)
Fiedorowicz JG, Mills JA, Ruggle A, Langbehn D, Paulsen JS, and the PREDICT-HD Investigators of the Huntington Study Group. (2011). Suicidal Behavior in Prodromal Huntington Disease. Neurodegenerative Diseases, 8(6), 483-490 | Full article (free)
Downing N, Smith MM, Beglinger LJ, Mills J, Duff K, Rowe KC, et al. (2011). Perceived Stress in Prodromal Huntington Disease. Psychology & Health, 27(2), 196-209 | Full article (free)
Anderson KE, Gehl CR, Marder KS, Beglinger LJ, Paulsen JS and the Huntington Study Group. Comorbidities of obsessive and compulsive symptoms in Huntington’s disease. J Nerv Ment Dis, 2010;198(5):334-8 | Full article (free)
Duff K, Paulsen JS, Beglinger LJ, Langbehn DR, Wang C, Stout JC, …Queller S and the PREDICT-HD Investigators and Coordinators of the Huntington Study Group. “Frontal” behaviors before the diagnosis of Huntington’s disease and their relationship to markers of disease progression: evidence of early lack of awareness. J Neuropsychiatry Clin Neurosci, 2010 Spring;22(2):196-207 | Full article (free)
Beglinger LJ, Paulsen JS, Watson DB, Wang C, Duff K, Langbehn DR, et al. Obsessive and compulsive symptoms in prediagnosed Huntington’s disease. J Clin Psychiatry. 2008 Nov;69(11):1758-65 | Full article (free)
Duff K, Paulsen JS, Beglinger LJ, Langbehn DR, Stout JC. Psychiatric symptoms in Huntington’s disease before diagnosis: the PREDICT-HD study. Biological Psychiatry. 2007 Dec 15;62(12):1341-6 | Full article
Beglinger LJ, Langbehn DR, Duff K, Stierman L, Black DW, Nehl C, et al. Probability of obsessive and compulsive symptoms in Huntington’s disease. Biological Psychiatry. 2007 Feb 1;61(3):415-8 | Full article
IMAGING
Wijeratne, P.A., Garbarino, S., Gregory, S., Johnson, E.B., Scahill, R.I., Paulsen, J.S., … & Alexander, D.C. (2021). Revealing the Timeline of Structural MRI Changes in Premanifest to Manifest Huntington Disease. Neurology Genetics, 7(5), 617 | Full article
Aldine, A. S., Ogilvie, A., Wemmie, J., Kent, J., Schultz, J., Long, J. D., Kamholz, J., Sajjad, H., Kline, J., Shaw, E., Voss, M., Paulsen, J.S., & Magnotta, V. A. (2021). Moderate Intensity Exercise in Pre-manifest Huntington’s Disease: Results of a 6 months Trial. SVOA Neurology, 2(1), 6-36 | Full article
Ciarochi, J.A., Johnson, H.J., Calhoun, V.D., Liu, J., Espinoza, F.A., Bockholt, H.J., Misiura, M., Caprihan, A., Plis, S., Paulsen, J.S., & Turner, J.A. (2019). Concurrent Cross-Sectional and Longitudinal Analyses of Multivariate White Matter Profiles and Clinical Functioning in Pre-Diagnosis Huntington Disease.Journal of Huntington’s Disease, 8(2), 199-219 | Full article
Espinoza, F.A., Liu, J., Ciarochi, J., Turner, J.A., Vergara, V.M., Caprihan, A., Misiura, M., Johnson, H.J., Long, J.D., Bockholt, J.H., Paulsen, J.S., & Calhoun, V.D. (2019). Dynamic functional network connectivity in Huntington’s disease and its associations with motor and cognitive measures.Human Brain Mapping, 40(6), 1955-1968 | Full article
Tang, X., Ross, C.A., Johnson, H., Paulsen, J.S., Younes, L., Albin, R.L., … & Miller, M.I. (2019). Regional subcortical shape analysis in premanifest Huntington’s disease. Human Brain Mapping, 40(5), 1419-1433 | Full article
Espinoza, F.A., Turner, J.A., Vergara, V.M., Miller, R.L., Mennigen, E., Liu, J., Misiura, M.B., Ciarochi, J., Johnson, H.J., Long, J.D., Bockholt, H.J., Magnotta, V.A., Paulsen, J.S., & Calhoun, V.D. (2018). Whole-Brain connectivity in a large study of Huntington’s disease gene mutation carriers and healthy controls. Brain Connectivity, 8(3), 166-178 | Full article
Hong, Y., O’Donnell, L.J., Savadjiev, P., Zhang, F., Wassermann, D., Pasternak, O., Johnson, H., Paulsen, J.S., … & Rathi, Y. (2018). Genetic load determines atrophy in hand cortico‐striatal pathways in presymptomatic Huntington’s Disease.Human Brain Mapping, 39(10), 3871-3883 | Full article
Tang, X., Luo, Y., Chen, Z., Huang, N., Johnson, H.J., Paulsen, J.S., & Miller, M.I. (2018). A fully automated subcortical and ventricular shape generation pipeline preserving smoothness and anatomical topology. Frontiers in Neuroscience, 12, 321 | Full article
Shaffer, J.J., Ghayoor, A., Long, J.D., Kim, R.E.Y., Lourens, S., O’Donnell, Westin, C.F., Rathi, Y., Magnotta, V., Paulsen, J.S., & Johnson, H.J. (2017). Longitudinal diffusion changes in prodromal and early HD: Evidence of white‐matter tract deterioration. Human Brain Mapping, 38(3), 1460-1477 | Full article
Wu, D., Faria, A.V., Younes, L., Mori, S., Brown, T., Johnson, H., Paulsen, J.S., … & the PREDICT‐HD Investigators and Coordinators of the Huntington Study Group. (2017). Mapping the order and pattern of brain structural MRI changes using change‐point analysis in premanifest Huntington’s disease.Human Brain Mapping, 38(10), 5035-5050 | Full article
Ciarochi, J.A., Calhoun, V.D., Lourens, S., Long, J.D., Johnson, H.J., Bockholt, H.J., Liu, J., Plis, S.M., Paulsen, J.S., … & the PREDICT-HD Investigators and Coordinators of the Huntington Study Group. (2016). Patterns of co-occurring gray matter concentration loss across the Huntington disease prodrome. Frontiers in Neurology, 7, 147 | Full article
Forbes, J.L., Kim, R.E., Paulsen, J.S., & Johnson, H.J. (2016). An open-source label atlas correction tool and preliminary results on Huntington’s Disease whole-brain MRI atlases.Frontiers in Neuroinformatics, 10, 29 | Full article
Harrington, D.L., Long, J.D., Durgerian, S., Mourany, L., Koenig, K., Bonner-Jackson, A., Paulsen, J.S., … & Rao, S.M. (2016). Cross‐sectional and longitudinal multimodal structural imaging in prodromal Huntington’s disease. Movement Disorders, 31(11), 1664-1675 | Full article
Ghayoor, A., Paulsen, J.S., Kim, R.E., Johnson, H.J. (2016). Tissue classification of large-scale multi-site MR data using fuzzy k-nearest neighbor method. Proc. SPIE 9784, Medical Imaging 2016: Image Processing, 97841V (March 21, 2016) | Full article
Faria, A.V., Ratnanather, J.T., Tward, D.J., Lee, D.S., van den Noort, F., Wu, D., Brown, T., Johnson, H., Paulsen, J.S., Ross, C.A., Younes, L., Miller, M.I., and the PREDICT-HD Investigators and Coordinators of the Huntington Study Group (2016). Linking white matter and deep gray matter alterations in premanifest Huntington disease. Neuroimage: Clinical, 11:450-460 | Full article (free)
Kim, E.Y., Lourens, S., Long, J.D., Paulsen, J.S., & Johnson, H.J (2015). Preliminary analysis using multi-atlas labeling algorithms for tracing longitudinal change. Frontiers in Neuroscience, 9, 242 | Full article (free)
Matsui, J.T., Vaidya, J.G., Wassermann, D., Kim, R.E., Magnotta, V.A., Johnson, H.J., Paulsen, J.S., and PREDICT-HD Investigators and Coordinators of the Huntington Study Group (2015). Prefrontal cortex white matter tracts in prodromal Huntington disease. Human Brain Mapping, 36(10), 3717-3732 | Full article
Harrington, D.L., Rubinov, M., Durgerian, S., Mourany, L., Reece, C., Koenig, K., Bullmore, E., Long, J.D., Paulsen, J.S., PREDICT-HD Investigators and Coordinators of the Huntington Study Group, Rao, S.M. (2015). Network topology and functional connectivity disturbances precede the onset of Huntington’s disease. Brain, 138(8), 2332-2346 | Full article
Wassef, S., Wemmie, J., Johnson, C.P., Johnson, H., Paulsen, J.S., Long, J.D., Magontta, V.A. (2015). T1p imaging in premanifest Huntington disease reveals changes associated with disease progression. Movement Disorders, 30(8): 1107-1114 | Full article
Liu, D., Johnson, H.J., Long, J.D., Magnotta, V.A., Paulsen, J.S. (2014) The power-proportion method for intracranial volume correction in volumetric imaging analysis. Frontiers in Neuroscience, 8:356 | Full article (free)
Kim, E.Y., Magnotta, V.A., Liu, D., Johnson, H.J. (2014) Stable Atlas-based Mapped Prior (STAMP) Machine-learning Segmentation for Multicenter Large-scale MRI Data. Magnetic Resonance Imaging, 32(7): 832-844 | Full article (free)
Muralidharan, P., Fishbaugh, J., Johnson, H.J., Durrleman, S., Paulsen, J.S., Gerig, G., Fletcher, P.T. (2014) Diffeomorphic shape trajectories for improved longitudinal segmentation and statistics. Medical Image Computing and Computer-Assisted Intervention, 17(Pt 3):49-56 | Full article
Plis, S.M., Hjelm, D.R., Salakhutdinov, R., Allen, E.A., Bockholt, H.J., Long, J.D., Johnson, H.J., Paulsen, J.S., Turner, J.A., Calhoun, V.D. (2014) Deep learning for neuroimaging: a validation study. Frontiers in Neuroscience, 8:229 | Full article (free)
Koenig, K., Lowe, M., Harrington, D.L., Lin, J., Durgerian, S., Mourany, L., Paulsen, J.S., Rao, S.M. (2014) Functional Connectivity of Primary Motor Cortex is Dependent on Genetic Burden in Prodromal Huntington Disease. Brain Connectivity, 4(7): 535-546 | Full article
Rao, J.A., Harrington, D.L., Durgerian, S., Reece, C., Mourany, L., Koenig, K., Lowe, M.J., Magnotta, V.A., Long, J.D., Johnson, H.J., Paulsen, J.S., Rao, S.M. (2014). Disruption of response inhibition circuits in prodromal Huntington disease. Cortex. 2014 Sep;58(1):72-85. | Full Article
Aylward, E.A., Harrington, D.L., Mills, J.A., Nopoulos, P.C., Ross, C.A., Long, J.D., Liu, D., Westervelt, H.K., Paulsen, J.S., and the PREDICT-HD Investigators and Coordinators of the Huntington Study Group (2013). Regional Atrophy Associated with Cognitive and Motor Function in Prodromal Huntington Disease. Journal of Huntington’s Disease, 2 (2013): 477-489 | Full article
Tang, C.C., Feigin, A., Ma, Y., Habek, C., Paulsen, J.S., Leenders, K.L., Teune, L.K., van Oostrom, C.H.J., Guttman, M., Dhawan, V., Eidelberg, D. (2013). Metabolic network as a progression biomarker of premanifest Huntington’s disease.The American Society for Clinical Investigation, 123(9):4076-4088. | Full Article
Magnotta, V.A., Matsui, J.T., Liu, D., Johnson, H.J., Long, J.D., Bolster, B.D. Jr., Mueller, B.A., Lim, K., Mori, S., Helmer, K.G., Turner, J.A., Reading, S., Lowe, M.J., Aylward, E., Flashman, L.A., Bonett, G., & Paulsen, J.S. (2012). Multicenter reliability of diffusion tensor imaging. Brain Connectivity, 2(6): 345-55 | Full article (free)
Matsui, J.T., Jatin, J.G., Johnson, H.J., Magnotta, V.A., Long, J.D., Mills, J.A., Lowe, M.J., Sakaie K.E., Rao, S.M., Smith, M.M., & Paulsen J.S. (2013). Diffusion weighted imaging of prefrontal cortex in prodromal Huntington’s disease. Human Brain Mapping, 35(4):1562-1573. | Full article
Younes L, Ratnanather JT, Brown T, Aylward E, Nopoulos P, Johnson H, Magnotta VA, Paulsen JS, Margolis RL, Albin RL, Miller MI, Ross CA and the PREDICT-HD Investigators and Coordinators of the Huntington Study Group. (2012). Regionally selective atrophy of subcortical structures in prodromal HD as revealed by statistical shape analysis. Hum Brain Mapping, 35(3):792-809. Easy-to-understand summary | Full article (free)
Aylward EH, Liu D, Nopoulos PC, Ross CA, Pierson RK, Mills JA, Long JD, Paulsen JS and the PREDICT-HD Investigators and Coordinators of the Huntington Study Group (2012). Striatal volume contributes to the prediction of onset of Huntington disease in incident cases. Biological Psychiatry, 71(9), 822-828 | Easy-to-understand summary | Full article (free)
Aylward EH, Nopoulos PC, Ross CA, Langbehn DR, Pierson RK, Mills JA, et al. (2011). Longitudinal change in regional brain volumes in prodromal Huntington disease. J Neurol Neurosurg Psychiatry, 82:405-410 | Full article (free)
Aylward E, Mills J, Liu D, Nopoulos P, Ross CA, Pierson R, Paulsen JS. (2011). Association between Age and Striatal Volume Stratified by CAG Repeat Length in Prodromal Huntington Disease [Internet]. Version 12. PLoS Currents: Huntington Disease | Full article (free)
Nopoulos PC, Aylward EH, Ross CA, Mills, et al. (2011). Smaller intracranial volume in prodromal Huntington’s disease: evidence for abnormal neurodevelopment. Brain, 134, 137-142 | Full article (free)
Nopoulos P, Aylward E, Ross CA, et al. (2010). Cerebral cortex structure in prodromal Huntington disease. Neurobiology of Disease, 40(3), 544-54 | Full article (free)
Soneson C, Fontes M, Denisov V, et al. (2010). Early changes in hypothalamic region in prodromal Huntington disease revealed by MRI-based analysis. Neurobiology of Disease, 40, 531-43 | Full article (free)
Paulsen JS, Nopoulos PC, Aylward E, et al. Striatal and white matter predictors of estimated diagnosis for Huntington disease. Brain Res Bull, 2010 May;82:201-207 | Full article (free)
Magnotta VA, Kim J, Koscik T, Beglinger LJ, Espinso D, Langbehn DR, Nopoulos P, Paulsen JS. Diffusion tensor imaging in preclinical Huntington’s disease. Brain Imaging and Behavior. 2009 March;(3):77-84 | Full article (free)
Paulsen JS. Functional imaging in Huntington’s disease. Exp Neurol. 2009 Apr;216(2):272-7. | Full article (free)
Klöppel S, Chu C, Tan GC, Draganski B, Johnson H, Paulsen JS, et al. Automatic detection of preclinical neurodegeneration: presymptomatic Huntington disease. Neurology. 2009 Feb 3;72(5):426-31 | Full article (free)
Paradiso S, Turner BM, Paulsen JS, Jorge R, Ponto LL, Robinson RG. Neural bases of dysphoria in early Huntington’s disease. Psychiatry Research. 2008 Jan 15;162(1):73-87 | Full article (free)
Nopoulos P, Magnotta VA, Mikos A, Paulson H, Andreasen NC, Paulsen JS. Morphology of the cerebral cortex in preclinical Huntington’s disease. Am J Psychiatry. 2007 Sep;164(9):1428-34 | Full article
Paulsen JS, Magnotta VA, Mikos AE, Paulson HL, Penziner E, Andreasen NC, Nopoulos PC. Brain structure in preclinical Huntington’s disease. Biological Psychiatry. 2006 Jan 1;59(1):57-63 | Full article
Cheng P, Magnotta VA, Wu D, Nopoulos P, Moser DJ, Paulsen J, Jorge R, Andreasen NC. Evaluation of the GTRACT diffusion tensor tractography algorithm: a validation and reliability study. Neuroimage. 2006 Jul 1;31(3):1075-85 | Full article
FUNCTIONAL
Sokol, L.L., Troost, J.P., Kluger, B.M., Applebaum, A.J., Paulsen, J S., Bega, D., … & Carlozzi, N.E. (2021). Meaning and purpose in Huntington’s disease: a longitudinal study of its impact on quality of life.Annals of Clinical and Translational Neurology, 8(8), 1668-1679 | Full article
Carlozzi, N.E., Boileau, N.R., Hahn, E.A., Barton, S.K., Cella, D., Paulsen, J.S., & Ready, R.E. (2020). Responsiveness to change over time: An examination of the neuro-QoL social function measures in persons with Huntington’s Disease.Journal of Huntington’s Disease, 9(1) 83-97 | Full article
Carlozzi, N.E., Goodnight, S., Kratz, A.L., Stout, J.C., Mccormack, M.K., Paulsen, J.S., … & Ready, R.E. (2019). Validation of Neuro-QoL and PROMIS mental health patient reported outcome measures in persons with Huntington disease.Journal of Huntington’s Disease, 8(4), 467-482 | Full article
Ready, R.E., Boileau, N.R., Barton, S.K., Lai, J.-S., McCormack, M.K., Cella, D., Fritz, N.E., Paulsen, J.S., & Carlozzi, N.E. (2019). Positive affect and well-being in Huntington’s disease moderates the association between functional impairment and HRQOL outcomes.Journal of Huntington’s Disease, 8(2), 221-232 | Full article
Carlozzi, N.E., Boileau, N.R., Perlmutter, J.S., Chou, K.L., Stout, J.C., Paulsen, J.S., … & Dayalu, P. (2018). Agreement between clinician-rated versus patient-reported outcomes in Huntington disease | Full article
Carlozzi, N.E., Hahn, E.A., Goodnight, S.M., Kratz, A.L., Paulsen, J.S., Stout, J.C., … & Schilling, S.G. (2018). Patient-reported outcome measures in Huntington disease: Quality of life in neurological disorders (Neuro-QoL) social functioning measures.Psychological Assessment, 30(4), 450 | Full article
Fritz, N.E., Boileau, N.R., Stout, J.C., Ready, R., Perlmutter, J.S., Paulsen, J.S., … & Carlozzi, N.E.. (2018). Relationships among apathy, health-related quality of life, and function in Huntington’s Disease. The Journal of Neuropsychiatry and Clinical Neurosciences, 30(3), 194-201 | Full article
Hahn, E.A., Downing, N.R., Stout, J.C., Paulsen, J.S., Ready, B., Goodnight, S., … & Carlozzi, N.E. (2018). Understanding the need for assistance with survey completion in people with Huntington disease. Quality of Life Research, 27(3), 801-810 | Full article
Boileau, N.R., Stout, J.C., Paulsen, J.S., Cella, D., McCormack, M.K., Nance, M.A., … & Carlozzi, N.E. (2017). Reliability and Validity of the HD-PRO-TriadTM, a Health-Related Quality of Life Measure Designed to Assess the Symptom Triad of Huntington’s Disease.Journal of Huntington’s Disease, 6(3), 201-215 | Full article
Carlozzi, N.E., Schilling, S.G., Lai, J.S., Paulsen, J.S., Hahn, E.A., Perlmutter, J.S., … & Cella, D. (2016). HDQLIFE: development and assessment of health-related quality of life in Huntington disease (HD). Quality of Life Research, 25(10), 2441-2455 | Full article
Wallace M, Downing N, Lourens S, Mills J, Kim J, Long J, Paulsen J, PREDICT-HD Investigators and Coordinators of the Huntington Study Group (2016). Is There an Association of Physical Activity with Brain Volume, Behavior, and Day-to-day Functioning? A Cross Sectional Design in Prodromal and Early Huntington Disease. PLOS Currents Huntington Disease, Mar 17 | Full article (free)
Kim JI, Long JD, Mills JA, Downing N, Williams JK, Paulsen JS, PREDICT-HD Investigators and Coordinators of the Huntington Study Group (2015). Performance of the 12-item WHODAS 2.0 in prodromal Huntington disease. European Journal of Human Genetics, 23(11): 1584-1587 | Full article (free)
Carlozzi NE, Kratz AL, Downing NR, Goodnight S, Miner JA, Migliore N, and Paulsen JS (2015). Validity of the 12-item World Health Organization Disability Assessment Schedule 2.0 (WHODAS 2.0) in individuals with Huntington disease (HD). Quality of Life Research, 24(8), 1963-1971 | Full article
Downing NR, Kim J, Williams JK, Long JD, Mills JA, Paulsen JS, and The PREDICT-HD Investigators and Coordinators of the Huntington Study Group (2014). WHODAS 2.0 in prodromal Huntington disease: measures of functioning in neuropsychiatric disease. European Journal of Human Genetics, 22(8):958-963. | Full article (free)
Brossman B, Williams JK, Downing N, Mills JA, Paulsen JS and the PREDICT-HD Investigators and Coordinators of the Huntington Study Group (2012). Development of the Huntington Disease Work Function Scale. Journal of Occupational & Environmental Medicine, 54(10):1300-1308 | Easy-to-understand summary | Full article (free)
Downing NR, Williams JK, Leserman AL, Paulsen JS (2012). Couples’ coping in prodromal Huntington disease: A mixed methods study. Journal of Genetic Counseling, 21(5):662-670. | Easy-to-understand summary | Full article
Vaccarino AL, Sills T, Anderson KE, Endicott J, Giuliano J, Guttman M, et al. (2011). Assessment of Day-to-Day Functioning in Prodromal and Early Huntington Disease [Internet]. Version 154. PLoS Currents: Huntington Disease | Full article (free)
Williams J, Downing N, Vaccarino AL, Guttman M, Paulsen JS, and the PREDICT-HD Investigators of the HSG. (2011). Self Reports of Day-to-Day Function in a Small Cohort of People with Prodromal and Early HD [Internet]. Version 18. PLoS Currents: Huntington Disease | Full article (free)
Paulsen JS, Wang C, Duff K, et al. (2010). Challenges assessing clinical endpoints in early Huntington disease. Mov Disord, 25(15), 2595-2603 | Full article (free)
Beglinger LJ, O’Rourke JJF, Wang C, et al. Earliest functional declines in Huntington disease. Psychiatry Res, 2010;17:414-8 | Full article (free)
Downing N, Williams JK, Paulsen JS. Couples’ attributions for work function changes in prodromal Huntington disease. Journal of Genetic Counseling 2010;19(4):343-352 | Full article (free)
Sparbel KJ, Driessnack M, Williams JK, Schutte DL, Tripp-Reimer T, McGonigal-Kenney M, Jarmon L, Paulsen JS. Experiences of teens living in the shadow of Huntington disease. J Genet Couns. 2008 Aug;17(4):327-35 | Full article (free)
Ready RE, Mathews M, Leserman A, Paulsen JS. Patient and caregiver quality of life in Huntington’s disease. Mov Disord. 2008 Apr 15;23(5):721-6 | Full article (free)
ETHICS
Boileau, N.R., Paulsen, J.S., Ready, R.E., Hahn, E.A., Lai, J.S., & Carlozzi, N.E. (2020). Understanding domains that influence perceived stigma in individuals with Huntington disease.Rehabilitation Psychology, 65(2), 113-121 | Full article
Carlozzi, N.E., Boileau, N.R., Paulsen, J.S., Perlmutter, J.S., Lai, J.S., Hahn, E.A., … & Downing, N.R. (2019). End-of-life measures in Huntington disease: HDQLIFE meaning and purpose, concern with death and dying, and end of life planning. Journal of Neurology, 266(10), 2406-2422 | Full article
Carlozzi, N.E., Hahn, E.A., Frank, S.A., Perlmutter, J.S., Downing, N.D., McCormack, M.K., … & HDQLIFE Site Investigators and Coordinators. (2018). A new measure for end of life planning, preparation, and preferences in Huntington disease: HDQLIFE end of life planning.Journal of Neurology, 265(1), 98-107 | Full article
Carlozzi, N.E., Downing, N.R., McCormack, M.K., Schilling, S.G., Perlmutter, J.S., Paulsen, J.S., … & Cella, D. (2016). New measures to capture end of life concerns in Huntington disease: Meaning and Purpose and Concern with Death and Dying from HDQLIFE (a patient-reported outcomes measurement system).Quality of Life Research, 25(10), 2403-2415 | Full article
Paulsen, J.S., Nance, M., Kim, J., Carlozzi, N.E., Panegyres, P.K., Erwin, C., Anita, G., McCusker, E., Williams, J.K. (2013). A Review of Quality of Life after Predictive Testing for Earlier Identification of Neurodegenerative Diseases. Progress in Neurobiology, 110:2-28. | Full article (free)
Goh, A.M., Chiu, E., Yastrubetskaya, O., Erwin, C., Williams, J.K., Juhl, A.R., Paulsen, J.S. (2013). Perception, experience, and response to genetic discrimination in Huntington’s disease: the Australian results of the International RESPOND-HD study.Genetic Testing and Molecular Biomarkers. 17(2), 115-121 | Full article (free)
Bombard Y, Palin J, Friedman JM, Veenstra G, Creighton S, Paulsen JS, et al. (2011) Factors associated with experiences of genetic discrimination among individuals at risk for huntington disease. American Journal of Medical Genetics Part B: Neuropsychiatric Genetics, 156(1), 19-27 | Full article (free)
Williams JK, Erwin C, Juhl A, et al. (2010). Personal Factors Associated with Reported Benefits of HD Family History or Genetic Testing. Genet Test & Mol Biomarkers. 14(5), 629-636 | Full article (free)
Erwin C, Williams JK, Juhl AR, et al. Perception, experience, and response to genetic discrimination in Huntington disease: The International RESPOND-HD study. AJMG Part B: Neuropsychiatric Genet. 2010;153B(5):1081-93 | Full article (free)
Williams, JK, Erwin, C., Juhl, AR, et al. In their own words: Reports of genetic discrimination by people at risk for Huntington disease in the International RESPOND-HD study. AJMG Part B: Neuropsychiatric Genet. 2010;153B(6):1150-1159 | Full article (free)
Williams JK, Skirton H, Paulsen JS, Tripp-Reimer T, Jarmon L, McGonigal Kenney M, Birrer E, Hennig BL, Honeyford J. The emotional experiences of family carers in Huntington disease. J Adv Nurs. 2009 Apr;65(4):789-798 | Full article (free)
Bombard Y, Veenstra G, Friedman JM, Creighton S, Currie L, Paulsen JS, Bottorff JL, Hayden MR. Perceptions of genetic discrimination among people at risk for Huntington’s disease: a cross sectional survey. BMJ. 2009;338:b2175 | Full article (free)
Bombard Y, Penziner E, Suchowersky O, Guttman M, Paulsen JS, Bottorff JL, Hayden MR. Engagement with genetic discrimination: concerns and experiences in the context of Huntington disease. Eur J Hum Genet. 2008 Mar;16(3):279-89 | Full article (free)
Penziner E, Williams JK, Erwin C, Bombard Y, Wallis A, Beglinger LJ, Hayden MR, Paulsen JS. Perceptions of discrimination among persons who have undergone predictive testing for Huntington’s disease. Am J Med Genet B Neuropsychiatr Genet. 2008 Apr 5;147(3):320-5 | Full article (free)
Erwin C, Hersch S. Monitoring reportable events and unanticipated problems: the PHAROS and PREDICT studies of Huntington disease. IRB. 2007 May-Jun;29(3):11-6. | Full article
Bombard Y, Penziner E, Decolongon J, Klimek ML, Creighton S, Suchowersky O, Guttman M, Paulsen JS, Bottorff JL, Hayden MR. Managing genetic discrimination: strategies used by individuals found to have the Huntington disease mutation. Clin Genet. 2007 Mar;71(3):220-31 | Full article
Paulsen JS, Hayden M, Stout JC, Langbehn DR, Aylward E, Ross CA, Guttman M, Nance M, Kieburtz K, Oakes D, Shoulson I, Kayson E, Johnson S, Penziner E. Preparing for preventive clinical trials: the PREDICT-HD study. Archives of Neurology. 2006 Jun;63(6):883-90 | Full article
MOTOR
Lee, J. M., Huang, Y., Orth, M., Gillis, T., Siciliano, J., Hong, E., Mysore, J.S., Lucente, D., Wheeler, V.C., Seong, I.S., McLean, Z.L, Mills, J.A., McAllister, B., Lobanov, S.V., Massey, T.H., Ciosi, M., Landwehrmeyer, G.B., Paulsen, J.S., … & Gusella, J. (2022). Genetic modifiers of Huntington’s disease differentially influence motor and cognitive domains.The American Journal of Human Genetics, 109(5), 885-899 | Full article
Lobanov, S.V., McAllister, B., McDade-Kumar, M., Landwehrmeyer, G.B., Orth, M., Rosser, A.E., REGISTRY Investigators of the European Huntington’s Disease Network, Paulsen, J.S., … & Jones, L. (2022). Huntington’s disease age at motor onset is modified by the tandem hexamer repeat in TCERG1. npj Genomic Medicine 7 |Full article
McAllister, B., Donaldson, J., Binda, C. S., Powell, S., Chughtai, U., Edwards, G., Stone, J., Lobanov, S., Elliston, L., Schuhmacher, L.N., Rees, E., Menzies, G., Ciosi, M., Maxwell, A., Chao, M.J., Hong, E.P., Lucente, D., Wheeler, V., Lee, J.M., MacDonald, M.E., Long, J.D., Aylward, E.H., Landwehrmeyer, G.B., Rosser, A.E., REGISTRY Investigators of the European Huntington’s disease network, Paulsen, J.S., … & Massey, T. H. (2022). Exome sequencing of individuals with Huntington’s disease implicates FAN1 nuclease activity in slowing CAG expansion and disease onset. Nature Neuroscience, 25(4), 446-457 | Full article
Carlozzi, N.E., Schilling, S.G., Boileau, N.R., Chou, K.L., Perlmutter, J.S., Frank, S., McCormack, Stout, J.C., Paulsen, J.S., … & Dayalu, P. (2019). How different aspects of motor dysfunction influence day‐to‐day function in Huntington’s Disease | Full Article
Li, K., Furr-Stimming, E., Paulsen, J.S., & Luo, S. (2017). Dynamic prediction of motor diagnosis in Huntington’s Disease using a joint modeling approach.Journal of Huntington’s Disease, 6(2), 127-137 | Full article
Long, J.D., Langbehn, D.R., Tabrizi, S.J., Landwehrmeyer, B.G., Paulsen, J.S., Warner, J., & Sampaio, C. (2017). Validation of a prognostic index for Huntington’s disease. Movement Disorders, 32(2), 256-263 | Full article
Frank, S., Testa, C.M., Stamler, D., Kayson, E., Davis, C., Edmondson, M.C., Kinel, S, Leavitt, B., Oakes, D., O’Neill, C., Vaughan, C., Goldstein, J., Herzog, M., Snively, V., Whaley, J., Wong, C., Suter, G., Jankovic, J., Jimenez-Shahed, J., Hunter, C., Claassen, D.O., Roman, O.C., Sung, V., Smith, J., Janicki, S., Clouse, R., Saint-Hilaire, M., Hohler, A., Turpin, D., James, R.C., Rodriguez, R., Rizer, K., Anderson, K.E., Heller, H., Carlson, A., Criswell, S., Racette, B.A., Revilla, F.J., Nucifora Jr., F., Margolis, R.L., Ong, M.J., Mendis, T., Mendis, N., Singer, C., Quesada, M., Paulsen, J.S., … & Vaughan, C. (2016). Effect of deutetrabenazine on chorea among patients with Huntington disease: a randomized clinical trial. JAMA, 316(1), 40-50 | Full article
Holtbernd, F., Tang, C.C., Feigin, A., Dhawan, V., Ghilardi, M.F., Paulsen, J.S., … & Eidelberg, D. (2016). Longitudinal changes in the motor learning-related brain activation response in presymptomatic Huntington’s Disease. PloS One, 11(5) | Full article
Carvalho, J.O., Long, J.D., Westervelt, H.J., Smith, M.M., Bruce, J.M., Kim, J.I., Mills, J.A., Paulsen, J.S., the PREDICT-HD Investigators and Coordinators of the Huntington Study Group (2016). The impact of oculomotor functioning on neuropsychological performance in Huntington disease. Journal of Clinical and Experimental Neuropsychology, 38(2):217-226 | Full article
Liu, D., Long, J.D., Zhang, Y., Raymond, L.A., Marder, K., Rosser, A., McCusker, E.A., Mills, J.A., Paulsen, J.S., and the PREDICT-HD Investigators and Coordinators of the Huntington Study Group (2015). Motor onset and diagnosis in Huntington disease using the diagnostic confidence level. Journal of Neurology, 262(12):2691-2698 | Full article
Georgiou-Karistianis N., Long J.D., Lourens, S.G., Stout, J.C., Mills, J.A., Paulsen, J.S., The PREDICT-HD Investigators and Coordinators of the Huntington Study Group (2014). Movement sequencing in Huntington disease. World Journal of Biological Psychiatry. 15(6), 459-471 | Full article
Long, J.D., Paulsen, J.S., Marder, K., Zhang, Y., Kim, J., Mills, J.A. (2014). Tracking motor impairments in the progression of Huntington’s disease. Movement Disorders, 29(3):311-319 | Full article (free)
McCusker, E., Gunn, D., Epping, E., Loy, C., Radford, K., Griffith, J., Mills, J., Long, J., Paulsen, J., PREDICT-HD Investigators of the Huntington Study Group (2013). Unawareness of motor phenoconversion in Huntington disease. Neurology, 81(13):1141-1147 | Easy-to-understand summary | Full article (free)
Vaccarino AL, Anderson K, Borowsky B, Duff K, Giuliano J, Guttman M, et al. (2011). An item response analysis of the motor and behavioral subscales of the unified Huntington’s disease rating scale in Huntington disease gene expansion carriers. Movement Disorders, 26(5), 877-884 | Full article (free)
Vaccarino AL, Sills T, Anderson KE, Biglan K, Borowsky B, Giuliano J, et al. (2011). Assessment of Motor Symptoms and Functional Impact in Prodromal and Early Huntington Disease [Internet]. Version 209. PLoS Currents: Huntington Disease | Full article (free)
Biglan KM, Ross CA, Langbehn DR, Aylward EH, Stout JC, Queller S, Carlozzi NE, Duff K, Beglinger LJ, Paulsen JS. Motor abnormalities in premanifest persons with Huntington’s disease: The PREDICT-HD study. Mov Disord. 2009;24(12):1763-72 | Full article (free)
BIOMARKERS
Wijeratne, P.A., Johnson, E.B., Gregory, S., Georgiou-Karistianis, N., Paulsen, J.S., Scahill, R.I., … & Alexander, D.C. (2021). A Multi-Study Model-Based Evaluation of the Sequence of Imaging and Clinical Biomarker Changes in Huntington’s Disease.Frontiers in Big Data, 4, 662200 | Full article
Wijeratne, P.A., Johnson, E.B., Eshaghi, A., Aksman, L., Gregory, S., Johnson, H.J., Poudel, G.R., Mohan, A., Sampaio, C., Georgiou-Karistianis, N., Paulsen, J.S., … & Alexander, D.C. (2020). Robust markers and sample sizes for multicenter trials of Huntington disease. Annals of Neurology, 87(5), 751-762 | Full article
Reed, E.R., Latourelle, J.C., Bockholt, J.H., Bregu, J., Smock, J., Paulsen, J.S., … & PREDICT-HD CSF ancillary study investigators. (2018). MicroRNAs in CSF as prodromal biomarkers for Huntington disease in the PREDICT-HD study. Neurology, 90(4), e264-e272 | Full article
Tan, Z., Dai, W., van Erp, T.G.M., Overman, J., Demuro, A., Digman, M.A., Hatami, A., Albay, R., Sontag, E.M., Potkin, K.T., Ling, S., Macciardi, F., Bunney, W.E., Long, J.D., Paulsen, J.S., Ringman, J.M., Parker, I., Glabe, C., Thompson, L.M., Chiu, W., Potkin, S.G. (2015). Huntington’s disease cerebrospinal fluid seeds aggregation of mutant huntingtin. Molecular Psychiatry, 20(11), 1286-1293 | Full article (free)
Leoni, V., Long, J.D., Mills, J.A., Di Donato, S., Paulsen, J.S., and the members of the PREDICT-HD study group (2013). Plasma 24S-hydroxycholesterol correlation with markers of Huntington disease progression. Neurobiology of Disease, 55:37-43 | Easy-to-understand summary | Full article (free)
Long, J.D., Matson, W.R., Juhl, A.R., Leavitt, B.R., Paulsen, J.S., and the PREDICT-HD Investigators and Coordinators of the Huntington Study Group. (2012). 80HdG as a marker for Huntington disease progression. Neurobiology of Disease, 46(3), 625-634 | Easy-to-understand summary | Full article (free)
Paulsen JS. Biomarkers to predict and track diseases. Lancet Neurology. 2009 Sep;8(9):776-7 | Full article
Aylward EH. Change in MRI striatal volumes as a biomarker in preclinical Huntington’s disease. Brain Res Bull. 2007;72:152-158 | Full article
STATISTICS
Abeyasinghe, P.M., Long, J.D., Razi, A., Pustina, D., Paulsen, J.S., Tabrizi, S.J., … & Georgiou-Karistianis, N. (2021). Tracking Huntington’s Disease Progression Using Motor, Functional, Cognitive, and Imaging Markers.Movement Disorders, 36(10), 2282-2292 |Full article
Paulsen, J.S. , Lourens, S., Kieburtz, K., & Zhang, Y. (2019). Sample enrichment for clinical trials to show delay of onset in Huntington Disease.Movement Disorders, 34(2), 274-280 | Full article
Ciarochi, J.A., Liu, J., Calhoun, V., Johnson, H., Misiura, M., Bockholt, H.J., Espinoza, F.A., Caprihan, A., Plis, S., Turner, J.A., Paulsen, J.S., & the PREDICT-HD Investigators and Coordinators of the Huntington Study Group (2018). High and low levels of an NTRK2-driven genetic profile affect motor-and cognition-associated frontal gray matter in prodromal Huntington’s disease.Brain Sciences, 8(7), 116 | Full article
Garcia, T.P., Wang, Y., Shoulson, I., Paulsen, J.S., & Marder, K. (2018). Disease progression in Huntington disease: An analysis of multiple longitudinal outcomes. Journal of Huntington’s Disease , 7(4), 337-344 | Full article
Liu, J., Ciarochi, J., Calhoun, V.D., Paulsen, J.S., Bockholt, H.J., Johnson, H.J., … & the PREDICT-HD Investigators and Coordinators of the Huntington Study Group. (2018). Genetics modulate gray matter variation beyond disease burden in prodromal Huntington’s Disease. Frontiers in Neurology, 9, 190 | Full article
Long, J.D., Lee, J.M., Aylward, E.H., Gillis, T., Mysore, J.S., Elneel, K.A., Chao, M.J., Paulsen, J.S., … & Gusella, J.F. (2018). Genetic modification of Huntington disease acts early in the prediagnosis phase. The American Journal of Human Genetics, 103(3), 349-357 | Full article
Misiura, M.B., Lourens, S., Calhoun, V.D., Long, J., Bockholt, J., Paulsen, J.S., … & Kara, B. (2017). Cognitive control, learning, and clinical motor ratings are most highly associated with basal ganglia brain volumes in the premanifest Huntington’s disease phenotype. Journal of the International Neuropsychological Society , 23(2), 159-170 | Full article
Lourens, S., Zhang, Y., Long, J.D., Paulsen, J.S. (2017) Analysis of longitudinal censored semicontinuous data with application to the study of executive dysfunction: The Towers Task. Statistical Methods in Medical Research, 26(2), 865-879 | Full article
Downing, N.R., Lourens, S., De Soriano, I., Long, J.D., & Paulsen, J.S. (2016). Phenotype characterization of HD intermediate alleles in PREDICT-HD.Journal of Huntington’s Disease, 5(4), 357-368 |Full article
Zhang Y, Long JD, Mills JA, Warner JH, Lu W, Paulsen JS, and the PREDICT-HD Investigators of the Huntington Study Group. (2011). Indexing disease progression at study entry with individuals at-risk for Huntington disease. Am J Med Genet B: Neuropsychiatric Genet, 156(7), 751-763 | Easy-to-understand summary | Full article (free)
Langbehn DR, Hayden MR, Paulsen JS. CAG-repeat length and the age of onset in Huntington disease (HD): A review and validation study of statistical approaches. Am J Med Genet B Neuropsychiatric Genet. 2010 Feb;153B:397-408 | Full article (free)
Langbehn DR, Paulsen JS. Predictors of diagnosis in Huntington disease. Neurology. 2007 May 15;68(20):1710-7 | Full article
Langbehn DR, Brinkman RR, Falush D, Paulsen JS, Hayden MR. A new model for prediction of the age of onset and penetrance for Huntington’s disease based on CAG length. ClinGenet. 2004 Apr;65(4):267-77 | Full article
Select PREDICT-HD Abstracts, Presentations, and Symposia
Henson, A., Joyce, C., Pinto, A., Rudrud, M., Janz, M., Houghtaling, N., … & Paulsen, J.S. (2023). Assessing changes in irritability longitudinally in presymptomatic Huntington’s Disease gene expansion carriers. International Convention of Psychological Science. Brussels, BE. March.
Houghtaling, N., Janz, M., Adams, W., Henson, A., Rudrud, M., Baumhardt, P., & Paulsen, J.S. (2023). Is the Problem Behaviors Assessment Short-form a reliable measure for Huntington’s disease? International Convention of Psychological Science. Brussels, BE. March.
Rudrud, M., Adams, W., Houghtaling, N., Janz, M., Henson, A., & Paulsen, J.S. (2023). Is Olfactory Circuit Impairment Capable of Detecting Huntington’s Disease? International Convention of Psychological Science. Brussels, BE. March.
Paulsen JS, Long JD, Kim JI, Mills JA and the PREDICT-HD Investigators and Coordinators of the HSG. Prospective diagnosis of huntington disease: prognostic indicators and directions for future study. 7th EHDN Plenary Meeting. Stockholm, Sweden. Sept. 14-16. J Neurol Neurosurg Psychiatry 2012;83: Suppl 1A31 http://dx.doi.org/doi:10.1136/jnnp-2012-303524.96
Paulsen JS, Long JD and the PREDICT-HD Investigators and Coordinators of the Huntington Study Group. Rate of progression is associated with age of disease onset for all HD. 7th EHDN Plenary Meeting. Stockholm, Sweden. Sept. 14-16. J Neurol Neurosurg Psychiatry 2012;83: Suppl 1A31 http://dx.doi.org/doi:10.1136/jnnp-2012-303524.98
Paulsen JS, Smith M, Long JD and the PREDICT-HD Investigators and Coordinators of the HSG. What are the best cognitive tests for clinical trials? The devil is in the details. 7th EHDN Plenary Meeting. Stockholm, Sweden. Sept. 14-16. J Neurol Neurosurg Psychiatry 2012;83: Suppl 1A31 http://dx.doi.org/doi:10.1136/jnnp-2012-303524.112
Long JD, Paulsen JS, Zhang Y, Kim JI, Mills JS, Liu W and the PREDICT-HD Investigators and Coordinators of the Huntington Study Group. Critical consideration of the criteria for the motor diagnosis of huntington disease.7th EHDN Plenary Meeting. Stockholm, Sweden. Sept. 14-16. J Neurol Neurosurg Psychiatry 2012;83: Suppl 1A31 http://dx.doi.org/doi:10.1136/jnnp-2012-303524.7
Evans K, Ackloo S, Chen J, Dharsee M, Li J, Paulsen JS, Sills T, Vaccarino A and the PREDICT-HD Investigators and Coordinators. Quantifying putative biomarkers of Huntington disease in blood and urine by selected reaction monitoring mass spectrometry. 7th EHDN Plenary Meeting. Stockholm, Sweden. Sept. 14-16. J Neurol Neurosurg Psychiatry 2012;83: Suppl 1A31 http://dx.doi.org/doi:10.1136/jnnp-2012-303524.75
Valerio L, Di Donato S, Long J, Juhl A, Paulsen J. Progressive reduction of plasma 24S-hydroxycholestrol in prodromal HD subjects according with clinical and MRI features in the PREDICT-HD study. 7th EHDN Plenary Meeting. Stockholm, Sweden. Sept. 14-16. J Neurol Neurosurg Psychiatry 2012;83: Suppl 1A31 http://dx.doi.org/doi:10.1136/jnnp-2012-303524.78
Vaccarino A, Anderson K, Borowsky B, Craufurd D, Giuliano J, Guttman M, Ho A, Landwehrmeyer B, Paulsen JS, Sills T, Evans K and the FuRST-phD and PREDICT-HD Investigators and Coordinators. The functional rating taskforce for pre-huntington’s disease: development of the furst-21 scale. 7th EHDN Plenary Meeting. Stockholm, Sweden. Sept. 14-16. J Neurol Neurosurg Psychiatry 2012;83: Suppl 1A31 http://dx.doi.org/doi:10.1136/jnnp-2012-303524.141
McCusker E, Gunn D, Epping E, Loy C, Long J, Radford K, Griffith J, Mills J, Paulsen J and the PREDICT-HD Investigators and Coordinators of the Huntington Study Group. Unawareness of motor phenoconversion in huntington disease.7th EHDN Plenary Meeting. Stockholm, Sweden. Sept. 14-16. J Neurol Neurosurg Psychiatry 2012;83: Suppl 1A31 http://dx.doi.org/doi:10.1136/jnnp-2012-303524.100
Paulsen JS. PREDICT-HD: Clinical Research Showcase [panel]. 2012 Huntington’s Disease Society of America National Convention. Las Vegas, NV. June 9, 2012.
Thompson S. PREDICT-HD: An observational study of the earliest signs of Huntington disease. 2012 Huntinton’s Disease Society of America National Convention National Youth Alliance Day. Las Vegas, NV. June 7, 2012.
Downing N, Williams JK. Living in Anticipation of Disability from Huntington Disease. Abstract Proposal for MNRS 2011 Proposed Symposium: Disabilities Across the Lifespan.
Epping E, Long J, Craufurd E, McCusker E, Paulsen J and the PREDICT-HD Investigators and Coordinators of the Huntington Study Group. Longitudinal Divergence between Subjects and Companions Assessments of Psychiatric Manifestation in Prodromal and Diagnosed Huntington Disease. Fifth Annual Huntington Disease Clinical Research Symposium. Nov. 5, 2011. Indianapolis, IN. Neurotherapeutics (2012), 9:226-239. http://dx.doi.org/doi:10.1007/s13311-011-0083-8
Smith M, Long J and Paulsen J. Cognitive Impairment in Prodromal Huntington disease: Longitudinal Data from PREDICT-HD. Fifth Annual Huntington Disease Clinical Research Symposium. Nov. 5, 2011. Indianapolis, IN. Neurotherapeutics (2012), 9:226-239. http://dx.doi.org/doi:10.1007/s13311-011-0083-8
Biglan K, Zhang Y, Geschwind M, Juhl A, Kang G, Killoran A, Lu W, McCusker E, Mills J, Raymond L, Testa C, Wojcieszek J, Paulsen J and the PREDICT-HD Investigators of the HSG. Refining the diagnosis of Huntington disease: The PREDICT-HD study. Fifth Annual Huntington Disease Clinical Research Symposium. Nov. 5, 2011. Indianapolis, IN. Neurotherapeutics (2012), 9:226-239. http://dx.doi.org/doi:10.1007/s13311-011-0083-8
Epping EA, Mills J, Smith MM, Beglinger LJ, Rowe KC, Fiedorowicz JG, Paulsen JS, and the PREDICT-HD Investigators of the HSG. Depression in prodromal Huntington disease. HSG, San Diego CA, Oct 2010.
Aylward E, Liu D, Nopoulos P, Ross CA, Pierson R, Mills J, Paulsen JS, and the PREDICT-HD Investigators. Rate of striatal atrophy increases with CAG repeat length. HSG, San Diego CA, Oct 2010.
Evans K, Anderson K, Borowsky B, Giuliano J, Guttman M, Ho A, Paulsen J, Sills T, Vaccarino A, van Kammen D, and the FuRST-pHD and PREDICT-HD investigators and coordinators. The functional rating taskforce for pre-Huntington’s disease: Results so far. EHDN meeting, September 2010.
Sills T, Geraci J, Vaccarino A, Anderson K, Borowsky B, Giuliano J, Guttman M, Ho A, Paulsen J, van Kammen D, Evans K, and the FuRST-pHD and PREDICT-HD investigators and coordinators. Progression of motor symptoms prior to diagnosis in HD-gene carriers. EHDN meeting, September 2010.
Paulsen JS. PREDICT Update. 2010 Huntington’s Disease Society of America National Convention; June 26, 2010; Raleigh, NC.
Paulsen JS. PREDICTing Care: The Value of Pre-Diagnostic Observation. 2010 Huntington’s Disease Society of America National Convention; June 26, 2010; Raleigh, NC.
Thompson S. PREDICT-HD – Neurobiological Predictors of Huntington’s Disease Version 2.0: A clinical research study of predictors of HD onset. Huntington’s Disease Society of America Northeast Ohio Chapter Open Forum; May 15, 2010; Independence, OH.
Tang C, Feigin A, Bussa M, Ma Y, Peng S, Guttman M, Paulsen JS, Dhawan V, Eidelberg D. Identification and Validation of an Abnormal Metabolic Network Associated with Phenoconversion of Preclinical Huntington’s Disease. 62nd American Academy of Neurology Annual Meeting Tuesday, April 13, 2010. Toronto, ON, Canada.
Williams JK, Brossman B, Downing N, Paulsen J. Measuring the patient reported outcome of work function in people with prodromal Huntington disease. Midwest Nursing Research Society Annual Research Conference; 2010 April; Kansas City, MO.
Downing N. Couples’ attributions of work function changes in prodromal Huntington disease. Midwest Nursing Research Society Conference; 2010 April; Kansas City, MO.
Paulsen J, Erwin C, Williams JK, Nance M, the PREDICT-HD Ethics Committee. Implications of PREDICT-HD for clinical geneticists. ACMG Annual Clinical Genetics Meeting; 2010 March.
Duff K. Is there anything presymptomatic about presymptomatic Huntington’s disease? Results from PREDICT-HD. University of Utah, grand rounds; 2009; Salt Lake City, UT.
Williams JK, Paulsen J. Issues in multi-site US/Canadian research with families of persons with HD. Midwest Nursing Research Society Annual Research Conference; 2009; Minneapolis, MN.
Aylward E, Nopoulos P, Ross CA, Pierson R, Mills J, Langbehn DR, Magnotta V, Johnson H, Paulsen J, PREDICT-HD Investigators and coordinators of the Huntington Study Group. Striatal volume distinguishes converters from non-converters: Findings from PREDICT-HD. Third Annual HD Clinical Research Symposium; 2009; Baltimore, MD.
Richardson KA, McCusker EA, Loy CT, Griffith J, Mills JA, Paulsen JS, Predict-HD Investigators of the Huntington Study Group. Lack of awareness of motor and cognitive phenoconversion in Huntington’s disease. Third Annual HD Clinical Research Symposium; 2009; Baltimore, MD.
Langbehn D, Paulsen J, and the PREDICT-HD Investigators and Coordinators of the Huntington Study Group, editors. Multivariate clinical predictors of Huntington disease (HD): Prospective results from the PREDICT-HD study. Third Annual Huntington Disease Clinical Research Symposium; 2009; Baltimore, MD.
Paulsen J. Challenges of international cognitive, psychiatric, genetic, imaging research: The PREDICT-HD study. 14th International Conference of the Association of Psychology & Psychiatry for Adults & Children; 2009; Athens, Greece. [May]
Espe-Pfeifer P, Arguello J, Taber S, Duff K. Progression of neurocognitive deficits associated with juvenile Huntington’s disease: A pediatric case study. National Academy of Neuropsychology 29th Annual Conference; 2009; New Orleans.
O’Rourke JJF, Queller S, Whitlock K, Beglinger L, Stout J, Duff K, Paulsen J, PREDICT-HD Investigators. Longitudinal cognitive declines in prediagnosed Huntington’s disease. National Academy of Neuropsychology 29th Annual Meeting; 2009; New Orleans, LA.
Williams JKE, Juhl A, Mengeling M, Bombard Y, Hayden M, Shoulson I, Taylor S, Paulsen J, Investigators of the Huntington Study Group. The RESPOND-HD study of genetic discrimination and stigma experiences of people at risk for Huntington disease. 2009 World Congress on Huntington’s Disease; 2009; Vancouver, BC.
Williams JK, Erwin C, Juhl A, Mengeling M, Bombard Y, Hayden M, Paulsen J, Huntington Study Group Investigators and PREDICT-HD and PHAROS Investigators. Responses to potential genetic discrimination by people at-risk for Huntington disease. 2009 World Congress on Huntington’s Disease; 2009; Vancouver, BC.
Queller S, O’Rourke JJF, Whitlock K, Davison J, Beglinger L, Duff K, Paulsen J, Stout J. Unified Huntington Disease Rating Scale (UHDRS) cognitive measures are sensitive to neurobiological changes in the prodromal phase of Huntington’s disease. 2009 World Congress on Huntington’s disease; 2009; Vancouver, BC.
Bombard Y, Palin J, Veenstra G, Friedman JM, Creighton S, Currie L, Paulsen JS, Bottorff JL, Hayden M and the Canadian RESPOND-HD Collaborative Research Group. Factors associated with experiences of genetic discrimination among individuals at risk for Huntington’s disease. World Congress on Huntington’s Disease; 2009; Vancouver, BC.
Byars J, Duff K, Moser D, Andreasen N, Paulsen J, Nopoulos P. Does Huntington’s disease affect premorbid intellectual functioning? 2009 World Congress on Huntington’s Disease; 2009; Vancouver, BC.
Evans K, Vaccarino A, Sills T, Gilbert-Evans S, Anderson K, Borowsky B, Duff K, Giuliano J, Guttman M, Ho A, Landwehrmeyer GB, Langbehn D, Paulsen J, van Kammen D and the FuRST-pHD, PREDICT-HD AND REGISTRY investigators and coordinators. Assessing depression in Huntington disease: relationship between disease progression depression and manifestation of motor symptoms. 2009 World Congress on Huntington’s Disease; 2009; Vancouver, BC.
Langbehn D, Hayden M, Paulsen JS and the PREDICT-HD Investigators of the Huntington Study Group. CAG-repeat length and the age of onset in Huntington disease (HD): A review of statistical approaches. 2009 World Congress on Huntington’s Disease; 2009; Vancouver, BC.
Nopoulos P, Byars J, Axelson E, Conrad A, Mahmood A, Paulsen J, and Magnotta V. Abnormal brain structure in children at risk for evidence for abnormal brain development. 2009 World Congress on Huntington’s Disease; 2009; Vancouver, BC.
Nopoulos P, Tyler E, Byars J, Axelson E, Conrad A, Mahmood A and Paulsen JS, Magnotta V. Abnormal behavior in children at risk for Huntington’s disease: Relationship to CAG length and striatum volume. 2009 World Congress on Huntington’s Disease; 2009; Vancouver, BC.
Paulsen J, Wang C, Duff K, Barker R, Nance M, Beglinger L, Moser D, Williams J, Simpson S, Langbehn D, van Kammen D and the PREDICT-HD Investigators of the Huntington Study Group. Challenges assessing functional outcomes in early Huntington’s disease. 2009 World Congress on Huntington’s Disease; 2009; Vancouver, BC.
Rowe K, Langbehn D, Duff K, Beglinger L, Wang C, Moser D, O’Rourke JJF, Stout J, Paulsen J and the PREDICT-HD Investigators of the Huntington Study Group. Self-paced timing task detects subtle changes in pre-diagnosed Huntington’s disease. 2009 World Congress on Huntington’s Disease; 2009; Vancouver, BC.
Skirton H, Williams JK, Barnette JJ and Paulsen JS. Huntington disease: caregivers’ experiences of health services in the United Kingdom and United States. 2009 World Congress on Huntington’s Disease; 2009; Vancouver, BC.
Vaccarino A, Evans K, Gilbert-Evans S, Sills T, Anderson K, Borowsky B, Duff K, Giuliano J, Guttman M, Ho A, Langbehn D, Paulsen J, van Kammen D and the FuRST-pHD and PREDICT-HD Investigators and Coordinators. Assessing behavioral symptoms prior to clinical diagnosis of Huntington’s disease: The functional rating taskforce for pre-Huntington’s disease. 2009 World Congress on Huntington’s Disease; 2009; Vancouver, BC.
Williams K, Skirton H, Barnette JJ and Paulsen JS. Personal concerns of United States and United Kingdom Huntington disease family caregivers. 2009 World Congress on Huntington’s Disease; 2009; Vancouver, BC.
Reynolds N, Paulsen J and Nance M. Evaluating juvenile-onset Huntington’s disease (JHD). 2009 World Congress on Huntington’s Disease; 2009; Vancouver, BC.
Pierson R, Beglinger L, Magnotta J, Vaidya J, Johnson H, Paulsen J. Basal ganglia circuit integrity assessed in working memory in Huntington’s disease. 2009 World Congress on Huntington’s Disease; 2009; Vancouver, BC.
Oster E, Juhl A, Erwin C, Williams JK, Mengeling M, Mills J, Bombard Y, Hayden M, Shoulson I, Taylor S, Dorsey ER, Paulsen J, Huntington Study Group Investigators and PREDICT-HD and PHAROS Investigators. Genetic discrimination in insurance: attitudes, behaviors and experiences. 2009 World Conference on Huntington’s Disease; 2009; Vancouver, BC.
Nopoulos P, Johnson H, Magnotta J, Pierson R, Langbehn DR, Ross CA, Aylward E, Paulsen J, Huntington Study Group Investigators and PREDICT-HD Investigators. Cerebral cortex morphology in subjects with Huntington’s disease prior to diagnosis. 2009 World Congress on Huntington’s disease; 2009; Vancouver, BC.
Erwin C, Williams JK, Juhl A, Mengeling M, Mills J, Bombard Y, Hayden M, Kayson E, Shoulson I, Quaid K, Taylor S, Paulsen J, Investigators of the Huntington Study Group. The RESPOND-HD study of genetic discrimination in persons at risk for Huntington disease. 2009 World Congress on Huntington’s Disease; 2009; Vancouver, BC.
Nopoulos P, Johnson H, Magnotta J, Pierson R, Langbehn DR, Ross CA, Aylward E, Paulsen J, Huntington Study Group Investigators and PREDICT-HD Investigators. Global and regional brain morphology in Huntington’s disease prior to diagnosis. 2009 World Congress on Huntington’s Disease; 2009; Vancouver, BC.
Duff K, Paulsen JS, Wang C, Mills J, Beglinger LJ, Langbehn DR, PREDICT-HD Investigators. Stress and coping in pre-diagnosed Huntington’s disease. 2009 World Congress on Huntington’s Disease; 2009; Vancouver, British Columbia, Canada.
Duff K, Paulsen JS, Mills J, Beglinger LJ, Moser D, PREDICT-HD Investigators. Mild cognitive impairment in pre-diagnosed Huntington’s disease. 2009 World Congress on Huntington’s Disease; 2009; Vancouver, British Columbia, Canada.
Aylward E, Ross CA, Nopoulos P, Pierson R, Mills J, Langbehn DR, Johnson H, Magnotta V, Paulsen J, PREDICT-HD Investigators and Coordinators of the Huntington Study Group. Striatal volume distinguishes incident cases of HD from nonconverter prodromal cases: Findings from PREDICT-HD. 2009 World Conference on Huntington’s Disease; 2009; Vancouver, BC.
Davison J, Queller S, Whitlock K, Rao S, Zimbelman J, Paulsen J, Stout J. Cognitive and sensorimotor contributions to performance of the trailmaking test and a paced tapping test in pre-diagnosis Huntington’s disease (PreHD). 2009 World Congress on Huntington’s disease; 2009; Vancouver, BC.
Aylward E, Nopoulos P, Pierson R, Langbehn DR, Ross CA, Juhl A, Johnson H, Magnotta V, Paulsen J, PREDICT-HD Investigators and Coordinators of the Huntington Study Group. Longitudinal change in striatal volume in prodromal Huntington’s disease. 2009 World Congress on Huntington’s Disease; 2009; Vancouver, BC.
Nopoulos P, Johnson H, Magnotta V, Pierson R, Langbehn DR, Ross CA, Aylward E, Paulsen J. Global and regional brain morphology in subjects with Huntington’s disease prior to diagnosis. Organization for Human Brain Mapping 15th Annual Conference; 2009; San Francisco, CA.
Magnotta V, Bonett GS, Turner J, Mueller B, Juhl A, Lim K, Reading S, Aylward E, Lowe M, Flashman L, Bolster B, Mori S, Helmer K, Paulsen J. Evaluation of multi-center diffusion tensor imaging. Organization for Human Brain Mapping 15th Annual Meeting; 2009; San Francisco, CA.
Paulsen J. Observational research update. Huntington’s Disease Society of America National Convention; 2009; Phoenix, AZ.
Paulsen J. Update on PREDICT-HD. Huntington’s Disease Society of American National Convention; 2009; Phoenix, AZ.
Solomon AC, Stout JC, Carlozzi NE, Queller S, Whitlock K, Aylward EH, Nopoulos P, Langbehn DR, Sparks BF, Paulsen JS. Neuroanatomical correlates of episodic memory in Huntington’s disease. International Neuropsychological Society’s 37th Annual Meeting; February 11-14, 2009; Atlanta, GA.
Aylward E, Nopoulos P, Pierson R, Langbehn DR, Ross CA, Paulsen J, PREDICT-HD Investigators and Coordinators of the Huntington Study Group. Longitudinal change in striatal volume in pre-clinical Huntington’s disease. Organization for Human Brain Mapping 15th Annual Meeting; 2009; San Francisco, CA: NeuroImage.
Vaccarino A, Anderson K, Borowsky BD, K., Evans K, Giuliano J, Guttman M, Ho A, Langbehn DR, Paulsen J, Sills T, Van Kammen D, FuRST-pHD and PREDICT-HD Investigators and Coordinators of the Huntington Study Group. An item response analysis of depressive symptomatology in pre-Huntington disease. 2nd Annual Huntington Disease Clinical Research Symposium; 2008; St. Pete Beach, FL.
Rowe K, Beglinger L, Wang C, Langbehn DR, Duff K, Paulsen J. Antidepressant use in PREDICT-HD: Patterns of use relevant to “naturalistic” drug studies. 2nd Annual Huntington Disease Clinical Research Symposium; 2008; St. Pete Beach, FL.
O’Rourke JJF, Beglinger L, Wang C, Langbehn DR, Duff K, Paulsen J. Earliest functional declines in Huntington’s disease. Second Annual Huntington Disease Clinical Research Symposium; 2008; St. Pete Beach, FL.
Evans K, Anderson K, Borowsky B, Duff K, Giuliano J, Guttman M, Ho A, Langbehn DR, Paulsen J, Sills T, Vaccarino A, van Kammen D, FuRST-pHD and PREDICT-HD Investigators and Coordinators of the Huntington Study Group. The functional rating scale taskforce for pre-Huntington’s Disease: An empirically-driven initiative for new scale development. 2nd Annual Huntington Disease Clinical Research Symposium; 2008; St. Pete Beach, FL.
Aylward E, Nopoulos P, Johnson H, Juhl A, Magnotta J, Pierson R, Langbehn DR, Ross CA, Paulsen J, PREDICT-HD Investigators and Coordinators of the Huntington Study Group. Longitudinal structural MRI data from PREDICT-HD: Striatal and cortical changes in pre-clinical HD. Second Annual Huntington Disease Clinical Research Symposium; 2008; St. Pete Beach, FL.
Duff K, Beglinger L, Stout J, Paulsen J, PREDICT-HD Investigators and Coordinators of the Huntington Study Group. Predicting cognitive decline: Another method for stratifying samples? 2nd Annual Huntington Disease Clinical Research Symposium; 2008; St. Pete Beach, FL.
Rowe K, Paulsen J, Nopoulos P, Beglinger L, Johnson H, Magnotta J, Pierson R, Langbehn DR, Aylward E, PREDICT-HD Investigators and Coordinators of the Huntington Study Group. White matter volume in pre-diagnosed Huntington’s disease. Neuroscience 2008; Washington, D.C.
Paulsen J. PREDICT-HD: A multi-center study evaluating the neurobiology of Huntington’s disease (HD) through assessment of preHD subjects. 47th Annual Meeting of the American College of Neuropsychopharmacology; 2008; Scottsdale, AZ.
Gomez-Anson B, Rotger R, Delfino M, Johnson H, Sainz A, Paulsen J. Retrospective QA project: preliminary results. Annual Meetings of the European HD Network; 2008; Lisboa, Portugal.
Duff K, Paulsen J, Langbehn DR, Wang C, Vaccarino A, Evans K, Giuliano J, Guttman M, Anderson K, Van Kammen D, Borowsky B, PREDICT-HD Investigators and Coordinators of the Huntington Study Group. The need to develop more sensitive measures of functioning for pre-HD clinic trials. Annual Meetings of the European HD Network; 2008; Lisboa, Portugal.
Carlozzi N, Stout J, Whitlock K, Queller S, Aylward E, Langbehn DR, Duff K, Beglinger L, Paulsen J, PREDICT-HD Investigators and Coordinators of the Huntington Study Group. Estimating premorbid IQ in the prodromal phase of a neurodegenerative disease in the PREDICT-HD cohort. 35th Annual International Neuropsychological Society Meeting; 2008; Waikoloa, HI.
Whitlock K, Stout J, Queller S, Carlozzi N, Langbehn DR, Paulsen J, PREDICT-HD Investigators and Coordinators of the Huntington Study Group. Individual and combined item analyses can shorten test length for the University of Pennsylvania Smell ID Test. 35th Annual International Neuropsychological Society Meeting; 2008; Waikoloa, HI.
Duff K, Paulsen JS, Beglinger LJ, Stout JC, Carlozzi NE, Queller S, Langbehn DR, Wang C, and PREDICT-HD Investigators of the Huntington Study Group. The “depression phenotype” in pre-diagnosed Huntington’s disease. Talk presented at the 21st Symposium on Etiology, Pathogenesis, and Treatment of Parkinson’s Disease and Other Movement Disorders. October 7, 2007; Washington DC.
Paulsen JS, Langbehn DR, Wang C, Duff K, Beglinger LJ, Carlozzi NE, Queller S, Stout JC, and the PREDICT-HD Investigators of the Huntington Study Group. Cognitive predictors of HD diagnosis in PREDICT-HD: A prospective study of cognition in phenoconversion (abstract). Oral presentation at the 3rd World Congress on Huntington’s Disease. September, 2007; Dresden, Germany.
Beglinger LJ, Paulsen JS, Duff K, Wang C, Langbehn DR, Watson, D, Stout JC, Carlozzi NE, Queller S, and the PREDICT-HD Investigators of the Huntington Study Group. Obsessive and compulsive symptoms in pre-diagnosed Huntington’s disease (abstract). Oral presentation at the 3rd World Congress on Huntington’s Disease. September, 2007; Dresden, Germany.
Duff K, Paulsen JS, Beglinger LJ, Stout JC, Carlozzi NE, Queller S, Langbehn DR, Wang C and the PREDICT-HD Investigators of the Huntington Study Group. Predicting depression in pre-diagnosed Huntington ‘s disease. Oral presentation at the 3rd World Congress on Huntington’s Disease. September 2007; Dresden, Germany.
Beglinger LJ, Adams WH, Paulsen JS, Paulsen, H, Kieburtz K, Robinson RG, Langbehn DR, Duff K, Fiedorowicz JG, Jorge R, Ramza N, Hanson J, Ellingrod V, Clarke W, Shoulson I. Citalopram and atomoxetine to enhance cognition in early Huntington’s disease: Two pilot clinical trials. Oral presentation at the 3rd World Congress on Huntington’s Disease. September, 2007; Dresden, Germany.
Langbehn DR, Paulsen JS, and the PREDICT-HD Investigators of the Huntington Study Group. Prospective validation of CAG-based age of diagnosis in Huntington’s disease. Oral presentation at the 3rd World Congress on Huntington’s Disease. September, 2007; Dresden, Germany.
Langbehn DR, Wang C, Duff K, Beglinger LJ, Carlozzi N, Queller S, Stout JC and the PREDICT-HD Investigators for the Huntington Study Group. Cognitive predictors of HD diagnosis in PREDICT-HD: A prospective study of cognition in phenoconversion. Oral presentation at the 3rd World Congress on Huntington’s Disease. September, 2007; Dresden, Germany.
Stout JC, Carlozzi NE, Queller S, Whitlock KB, Langbehn DR, Duff K, Beglinger LJ, Ross CA, Paulsen JS and the PREDICT-HD Investigators of the Huntington Study Group. Longitudinal assessment of pre-HD from the PREDICT-HD cohort: Preparation for clinical trials. Oral presentation at the 3rd World Congress on Huntington’s Disease. September, 2007; Dresden, Germany.
Hayden MR. Invited speaker at the World Congress on Huntington Disease. September, 2007; Dresden, Germany,
Duff K, Paulsen JS. Managing cognitive and behavioral symptoms. Presentation made at the annual convention of the Huntington’s Disease Society of America. June 16, 2007; Oklahoma City.
Duff K. HD 101. Presentation made at the annual convention of the Huntington’s Disease Society of American. June 15, 2007; Oklahoma City.
Espino D, Magnotta V, Beglinger L, Kim J, Langbehn D, Nopoulos P, Paulsen J. Diffusion tensor imaging in pre-symptomatic Huntington’s disease. Organization of Human Brain Mapping, June 2007; Chicago.
Stout JC. Honing in on the subtle declines in cognition in pre-diagnosis Hunting’s disease. Invited address for seminar for the Department of Medical and Molecular Genetics at the Indiana University School of Medicine. March 21, 2007; Indianapolis, IN.
Hayden MR. Keynote speaker at the Le Gruys Distinguished Lecture. March 15, 2007; University of British Columbia. Victoria, BC.
Hayden MR. Invited speaker at the Molecular Mechanisms of Neurodegeneration. January 16-20, 2007; Taos, NM.
Stout JC. Cognitive test selection strategies for clinical trials. Presented as part of the Continuing Education Program in a session entitled: “The Neuropsychologist and Clinical Trials”. International Neuropsychological Society Annual Program, a supplement of the Journal of the International Neuropsychological Society; 2006.
Hayden MR. Keynote speaker at the Huntington Society of Canada (HSC). Vancouver, BC. November 11, 2006.
Paulsen JS. PREDICT-HD update. Talk presented at 3rd Annual Plenary Meeting of the European Huntington’s Disease Network. September 15-16, 2006; Blankenberge, Belgium.
Hayden MR. Invited speaker at Neurodegenerative Diseases: Molecular Mechanisms in a Functional Genomics Framework. September 6-9, 2006; Berlin, Germany.
Stout JC, Queller S, Langbehn DR, Aylward E, Paulsen JS. Detection of cognitive changes in pre-diagnosis HD in the PREDICT-HD study. Talk presented at HD2006: Change, Advances and Good News (CAGn). August 11-13, 2006; Cambridge, Massachusetts.
Stout JC, Paulsen JS. PREDICT-HD: The search for clinical markers of pre-diagnostic Huntington’s disease progression. Talk presented at Huntington’s disease Satellite Meeting to the 11th International Congress of Human Genetics. August 4, 2006; Queensland Australia.
Stout JC. Clinical markers as outcome measures in clinical trials: challenges and prospects. Invited address to the HD Therapeutics Conference: A Forum for Drug Discovery & Development. February 9, 2006; Palm Springs, California.
Magnotta V, Cheng P. Guided diffusion tensor tractography with GTRACT: A validation study. 2005 MICCAI Workshop on Open-Source Software. October 30th, 2005; Palm Springs, CA.
Paulsen JS. Understanding behavior in Huntington’s disease. Talk presented at 2005 National Huntington’s Conference. October 15-16, 2005; Wellington, New Zealand.
Penziner E, Paulsen JS. PREDICT-HD: New research developments in Huntington’s disease. Talk presented at 2005 National Huntington’s Conference. October 15-16, 2005; Wellington, New Zealand.
Hayden MR. Keynote speaker at the World Congress of Huntington Disease. September 8, 2005; Manchester, UK.
Cheng P, Magnotta V, Wu D. Reproducibility of the DTI Fiber tracking using a novel graph search algorithm. Organization of Human Brain Mapping. June 2005; Toronto Canada.
Stout JC. Neurobiological predictors of Huntington’s disease: cognitive and imaging findings from the first 500 participants. Invited address to the Howard Florey Institute Seminar. June 6, 2005; Melbourne, Victoria (Australia).
Stout JC. Huntington’s disease 2005: New research and hope. Invited address to the Neurosciences Institute: Perth HD Community Presentation. May 27, 2005; Perth, (Australia).
Stout JC. Quantification of neurobiological progression prior to manifest Huntington’s disease. Invited address to Monash University Neurosciences and Neuropsychiatry Seminar. April 22, 2005; Clayton, Melbourne, Victoria (Australia).
Stout JC, Paulsen JS. Clinical phenoconversion outcomes. Invited address to the Huntington Study Group, Joint Meeting of the Pharos and PREDICT Steering Committees. February 28, 2005; Chicago, IL.
Hayden MR. Keynote speaker at The University of Hong Kong Genome Research Centre seminar. January 28, 2005; Hong Kong, China.
Stout JC. PREDICT-HD: Laying the groundwork for presymptomatic clinical trials: PREDICT HD. Invited address to the Huntington’s Research Group Victoria and the Australian Huntington’s Disease Association (Victoria) at the Huntington’s disease Research Symposium. December 2, 2004; Melbourne, Victoria (Australia).
Nopoulos P. Brain structure in preclinical Huntington’s disease: evidence for abnormal brain development. The ACNP 43rd Annual Meeting. December 2004; San Juan, Puerto Rico.
Stout JC. PREDICT-HD: Integrating clinical and basic science to reveal the neurobiological prodrome of Huntington disease. Symposium Chair (introductory remarks) for an invited symposium at the annual convention of the International Neuropsychological Society. Chair: Julie C. Stout; Speakers: Jane Paulsen, Douglas Langbehn, Christopher Ross, Shannon Johnson, Elizabeth Aylward. February 4-6; Baltimore, MD. International Neuropsychological Society Annual Program, a supplement of the Journal of the International Neuropsychological Society, 2004; 32:122.
Paulsen JS, Stout JC, Guttman M, Aylward E, Hayden M, Ross C, Nance M, Langbehn D, Kayson E, Kieburtz K, Shoulsen I, and the PREDICT-HD HSG Investigators. PREDICT-HD: Integrating clinical and basic science to reveal the neurobiological prodrome of Huntington disease. Symposium Chair (introductory remarks) for an invited symposium at the annual convention of the International Neuropsychological Society. Chair: Julie C. Stout; Speakers: Jane Paulsen, Douglas Langbehn, Christopher Ross, Shannon Johnson, Elizabeth Aylward. February 4-6; Baltimore, MD. International Neuropsychological Society Annual Program, a supplement of the Journal of the International Neuropsychological Society, 2004; 32:122.
Ross C, Stout JC, and the PREDICT-HD HSG investigators. PREDICT-HD: Associations of estimated years to onset and motor findings from the UHDRS Quantitative Neurological Examination in presymptomatic Huntington’s disease. International Neuropsychological Society. February 4-6; Baltimore, MD. International Neuropsychological Society Annual Program, a supplement of the Journal of the International Neuropsychological Society, 2004; 32:123.
Johnson SA, Stout JC, Paulsen JS, and the PREDICT-HD HSG Investigators. PREDICT-HD: A cognitive neuroscience approach to the study of cognition in presymptomatic Huntington’s disease. Presented as part of a symposium at the meeting of the International Neuropsychological Society. February 4-6; Baltimore, MD. International Neuropsychological Society Annual Program, a supplement of the Journal of the International Neuropsychological Society, 2004; 32:123.
Huntington Study Group/PREDICT-HD Investigators. Initial baseline characteristics in the PREDICT-HD (Neurobiological Predictors of HD) study. Invited address at the World Congress on Huntington’s disease. August 16-19, 2003; Toronto, Canada.
Stout JC. PREDICT-HD: Neurobiological predictors of onset in Huntington’s disease. Invited address at Frontiers in Neurodegeneration: Huntington’s disease. January 31-February 2, 2002; Reisenberg, Germany.
Stout JC. Cognitive assessment for PREDICT-HD. Invited address at the training meeting for PREDICT-HD, during the annual meeting of the Huntington’s Study Group. November 2-4, 2001; Toronto, Canada.
Stout JC. Connecting neuropsychology with medical genetics: The Huntington’s disease model. Invited symposium at the annual meeting of the International Neuropsychological Society. Chair: Julie C. Stout; Discussant: Jean A. Saint-Cyr; addresses given by Jane S. Paulsen, Jason Brandt, Julie C. Stout, and Elizabeth Aylward. February 14-17, 2001, Chicago, IL.
Stout JC. Longitudinal cognitive and motor changes in presymptomatic Huntington’s disease. Invited address as part of the symposium entitled “Connecting neuropsychology with medical genetics: The Huntington’s disease model” at the annual meeting of the International Neuropsychological Society. Chair: Julie C. Stout; Discussant: Jean A. Saint-Cyr; addresses given by Jane S. Paulsen, Jason Brandt, Elizabeth Aylward. February 14-17, 2001, Chicago, IL.
Stout JC. Regulation of neurocognitive functions in Huntington’s disease and Parkinson’s disease. Invited address as part of the symposium entitled “The inhibitory control of behavior: Mechanisms and related disorders,” at the annual convention of the International Neuropsychological Society. Chair: Sharon Nichols; Discussant: Martha Denckla; addresses given by Steward Mostofsky, Joseph Newman, Paul Malloy. February 14-17, 2001; Chicago, IL.
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