HD Research

HDSA: A Leader In Global HD Research

Since 1999, the HDSA has committed more than $18 million to fund research with the goal of finding effective treatments to slow Huntington’s disease.  Our past research efforts have also helped increase the number of scientists working on HD and have shed light on many of the complex biological mechanisms involved in HD.

In 1997, HDSA launched an innovative, new approach to tackle HD.  We brought together a group of some of the most well-known and prolific HD researchers from around the world to work together in teams to tackle large biological topics hypothesized to be involved in HD pathogenesis.  This team of researchers was called the Coalition for the Cure.  The Coalition Teams published important findings regarding the function of the huntingtin protein, potential new targets and pathways to treat HD and helped generate new animal models of HD to aid in HD drug discovery efforts.

While funding for the Coalition for the Cure ended in 2009, HDSA remains committed to continuing our long tradition of supporting HD research. With the unveiling of a new strategic plan for HDSA, we outlined key steps to take to bring research back to the HDSA portfolio.  In 2012, this plan was set into motion.

HDSA is now supporting initiatives in the following areas to answer critical research questions as they relate to the biology of HD, and have launched new initiatives to increase scientific communication:

 

Research News & Progress

Clinical Trial Participation

HD TrialFinder is a clinical trial matching service that identifies trials nationwide looking for people with your exact diagnosis, stage and treatment history. Hope for tomorrow begins with your involvement today! CLICK HERE

Observational Study Participation

Enroll-HD is a continuing global observational study of Huntington’s disease. The study collects a common set of data for all participants across all sites around the world that determine what interventions work to improve the care of people with HD, and assist researchers in developing more effective clinical trials. CLICK HERE

HDSA Scientific Advisory Board

The HDSA Scientific Advisory Board (SAB) is comprised of leading experts in their fields. The Scientific Advisory Board's role is to advise the Board of Trustees and HDSA Management on a range of issues. In general, the SAB provides scientific review of research proposals to ensure that the research programs at HDSA are scientifi­cally sound, pertinent and provide a high impact to the HD research community. The SAB can be called upon to advise HDSA on any scientific issues that may arise (e.g., stem cell policy, use of animals in research). CLICK HERE TO VIEW PROFILES OF BOARD MEMBERS

Further Reading

HD Insights, is a newsletter published the Huntington Study Group that promotes, disseminates, and facilitates research in Huntington disease by producing informative content that is valuable to the global community of HD researchers in academia and industry. CLICK HERE TO VIEW PAST PUBLICATIONS

HDBuzz.net is the first internet portal for the rapid dissemination of high-quality Huntington’s disease (HD) research news to the global community, written in plain language, by HD clinicians and scientists. It covers laboratory and clinical research, with the aim of helping HD people to understand the latest HD science, on their own terms. All content is disseminated from hdbuzz.net via free syndication to other HD community websites, blogs and social media platforms like Facebook and Twitter. CLICK HERE TO VISIT HDBUZZ.NET

Surveys

Researchers, clinicians and other HD healthcare professionals frequently need to solicit input from the HD patients, families and caregivers about topics such as genetic testing, symptoms and clinical trial participation through anonymous surveys.  The results of these surveys are used to help guide future HD care and research strategies. Here you will find information on surveys being performed by the HD research community that would benefit from your feedback.
 
HDSA only provides information on Institutional Review Board (IRB) approved surveys.  The surveys provide an opportunity for individuals to participate in the research process.  If you have a question about any of the surveys listed here, please contact the study coordinators directly.

Caring in the face of risk: exploring the meaning of genetic risk for HD young carers

The investigators of this study hope to learn whether and how the genetic risk associated with HD, due to the nature of its autosomal dominant inheritance, impacts the caregiving experience of youth providing care for a parent with Huntington’s disease. Further, we are interested in exploring if and how this caregiving experience impacts the young […]

CLICK HERE TO LEARN MORE ABOUT THIS SURVEY

Online Survey Opportunity

My name is Nicolò Zarotti and I am a PhD student at Lancaster University (UK) doing research on the psychological health of people affected by Huntington’s disease. I am appealing to you because I am carrying out an online survey on how people tested positive for HD regulate their own emotions and recognise them in […]

CLICK HERE TO LEARN MORE ABOUT THIS SURVEY

The Huntington’s Disease Health Index Study (HD-HI) Step 2Validation of Symptoms of Importance using a large Cross Sectional Study of HD Patients

Calling all individuals with HD and their caretakers! If you have firsthand experience with the disease and are interested in helping research efforts, we want your opinion. The University of Rochester is administering a half-hour online survey that will ask you to rate the impact that various common symptoms of the disease have on your […]

CLICK HERE TO LEARN MORE ABOUT THIS SURVEY

Care experience for HD patients and familieshttps://surveycenter1.pwc.com/Community/se/2511374513C4A8CC

The Griffin Foundation established the Huntington Disease (HD) Care Improvement Project with the Huntington Study Group (HSG) to help understand and improve the care experience for HD patients and families. The founder of the Griffin Foundation is also a caretaker for his wife who has HD. Finding the needed medical care and outreach support proved […]

CLICK HERE TO LEARN MORE ABOUT THIS SURVEY

Anxiety and stress in spouses and children of people with Huntington’s disease.

My name is Julia Shaner and I am a second-year genetic counseling student at Arcadia University.  I am currently working on a thesis project entitled “Stress and anxiety levels in children and spouses of patients with Huntington’s disease.” The purpose of this project is to compare levels of anxiety and stress due to caregiving and […]

CLICK HERE TO LEARN MORE ABOUT THIS SURVEY

Huntington Disease Survey

We invite you to participate in a research study conducted by investigators at The University of Pennsylvania. The purpose of this study is to evaluate the knowledge and perception of individuals towards gene therapy for Huntington’s Disease (HD).This survey is meant to obtain information about an individual’s beliefs and attitudes towards gene therapy for HD. […]

CLICK HERE TO LEARN MORE ABOUT THIS SURVEY

Juvenile HD Survey

Investigators at the University of Iowa are conducting a study about symptoms of Juvenile Huntington’s Disease (JHD) that may occur frequently, but are poorly recognized by health care professionals.   We are inviting adults who have been the primary caretaker for someone who has been diagnosed with JHD to complete an online survey to describe […]

CLICK HERE TO LEARN MORE ABOUT THIS SURVEY

Survey on End of Life issues in HD

Are you, a family member, or someone you care for at-risk for, or diagnosed with Huntington’s Disease? Are you 18 years old or older? If so, we invite you to help us better understand the values and beliefs of members of the HD community regarding challenges in late stage and end of life care in […]

CLICK HERE TO LEARN MORE ABOUT THIS SURVEY

Share Tweet

Share a link