How Can Youth Get Involved in HD Research?
Studies of drugs to treat Huntington’s disease have been primarily focused on adults, but the ultimate goal is to treat or even prevent HD symptoms in everyone who carries the gene. In order for trials and treatments to occur earlier and in younger people, it is essential that researchers gain a better understanding of the developing brain in people at risk for HD, and this is where youth from HD families can have a big impact.
Although HD drug trials are rarely open to anyone under the age of 25, there are several ways that young folks can get involved in HD research. These are summarized here and detailed in the sections below.
Observational Research Studies
- Studies that follow people over time but do not test a drug, known as observational research studies, are invaluable to how we understand HD. They can also allow young people to connect with and develop relationships with the teams and experts doing this work so that they may be considered for participation in future drug studies.
- Researchers and students studying HD in the context of becoming health providers (genetic counselors, physical and occupational therapists, social workers) often conduct surveys of the HD community and may focus on youth. The results of these promote knowledge and awareness of HD among trainees and their findings can shape HD care, advocacy, and policy.
- Many youth in HD families report that they act as a point person, sharing information and news about HD research with other family or community members. Staying informed and spreading accurate information is a form of research advocacy. The same goes for the act of supporting someone who is participating in HD research, such as accompanying them to study visits, or taking on household responsibilities that allow someone to be a part of an HD research trial.
To develop treatments and cures for HD, observational studies are critical. They are valuable tools to uncover how HD progresses in humans, identify what can be measured to evaluate the success of interventions, and more. These observational research studies are great entry points for young people interested in getting involved in HD research. Participants can be reimbursed for the expense of travel and associated costs; more detail can be found through each link.
Online Surveys for Youth in HD Families
- ChANGE-HD (www.changehd.org)
Young people with a parent or grandparent who has tested positive for or been diagnosed with Huntington's Disease (HD) are invited to participate in ChANGE-HD. This brain imaging study is led by the University of Iowa Hospitals and Clinics and has study sites in Iowa City, Houston, New York, Philadelphia and Sacramento. It focuses on young people ages 6-30 who have a family history of HD. For more information on this study, view the research flyer here, review FAQ's here, or visit the study website.
- Enroll-HD (https://www.enroll-hd.org/)
Enroll-HD is the world’s largest observational study of Huntington’s disease that monitors how the disease happens in people and how it changes over time. Currently, there are over 20,000 people taking part in the study in Europe, North America, Australasia, and Latin America. Anyone who has HD or is at-risk for HD is invited to participate in this study that is helping us understand all aspects of the disease and supporting development of treatments and cures for HD. You do not need to know your genetic status. It involves one yearly visit to a study site and there are hundreds around the world.
- HDClarity (https://hdclarity.net/)
This complementary study to Enroll-HD seeks to collect high-quality spinal fluid and blood samples to enable the development of novel treatments for HD. Anyone age 21-75 comfortable with donating samples can participate, whether you are someone at-risk for HD, symptomatic, or someone without HD.
- JOIN-HD Registry (https://join-hd.org/)
Managed by the Huntington’s Disease Youth Organization, JOIN-HD is a global registry for families affected by Juvenile onset Huntington’s Disease. Open to people who have JoHD and their caregivers, all the information added to the registry will help increase understanding of JoHD. This will allow for advocacy around improvements to care, research and awareness. We hope JOIN-HD will be a platform that will encourage other scientists and clinicians to carry out much needed research into this devastating disease.
- PREVENT-HD (https://neurology.wisc.edu/prevent-hd/)
The goal of this study is to develop tools to measure the effectiveness of clinical interventions for HD by identifying biomarkers that can be tracked in the premanifest stage of the disease before symptoms appear. This will support the development of treatments to delay or prevent the onset of HD. Individuals who have been genetically tested for HD (no matter what the outcome) and individuals who have recently been diagnosed with HD and are in the very early stages of the disease are invited to join PREVENT-HD. Trial participants will complete cognitive, motor, and quality of life tasks, have a brain scan, and undergo a lumbar puncture. Volunteers will be compensated for their time and reimbursed for travel.
HDSA vets and distributes many research surveys and interview opportunities to the HD community, and many are relevant to youth from HD families. Please check out www.hdsa.org/surveys
to see the current listing of surveys open to the community.
HDYO strives to support, educate and empower young people (18-35) impacted by Huntington’s disease. To accomplish this goal, they have launched a series of surveys to better understand different aspects of the community’s lives as they continue their journey with HD. Visit https://en.hdyo.org/a/752-hdyo-survey-series
to learn more.
HD Research Advocacy: Resources for Learning More
- HDSA’s HD Trialfinder is a website and call center where people can learn about and match to currently recruiting HD studies in the United States and Canada. You can create a profile for yourself or a loved one, or simply read about studies happening throughout North America.
- This Week in HD Research is HDSA’s weekly blog recapping HDSA research activities, research news, and more. It is written by HDSA’s Coordinator of Research and Mission Programs, Kelly Andrew (KAndrew@hdsa.org) and edited by HDSA’s Assistant Director of Research and Patient Engagement, Dr. Leora Fox (LFox@hdsa.org).
- HDBuzz is a website supported by HDSA where scientists write about HD research news in plain language and it is translated and syndicated globally.
- HDSA Research Webinars bring in scientists and industry representatives to talk about research progress and clinical trials.
- HDSA’s Research Pipeline consolidates current information about drugs for HD being developed around the world.