Summary
- Participate in HD Research: HD Data Collection Initiative, HD Trialfinder, and more
- This Week in HD History
- A Golden Age for Biomedical Innovation?
Participate in HD Research: HD Data Collection Initiative, HD Trialfinder, and more
Deciding whether to participate in research and what types of research studies are right for you are very personal decisions. Whether you are joining a clinical research study to test a new drug candidate for HD, showing up to your annual Enroll-HD visit, donating biological samples to further the study of HD, or participating in online research surveys from the comfort of your own home, there are so many ways to be involved in HD research, many of which were discussed at this year’s Convention.
HDTrialfinder is a great place to start when deciding what research studies are right for you. This clinical trials matching platform run by HDSA helps users discover which actively recruiting HD research studies they may be eligible for and includes drug studies, biomarker and imaging studies, quality of life studies, and registries. Make an account here to get started.
If you’re interested in research but unwilling to leave your air conditioning in the summer heat, there are options for you, too! HDSA-vetted online surveys can be completed from the comfort of your own home or from any place where you have access to internet. Whether you are a person with HD, living at-risk for HD, a gene-negative member of an HD family, a care partner of someone with HD, or a loved on of someone with HD, there is a survey option for you! Check out online surveys seeking participants here.
Additionally, HDSA recently announced the launch of the HD Data Collection Initiative in partnership with Rare-X. A representative from Rare-X joined HDSA’s Convention to share more about this opportunity. The goal of this project is to engage individuals with HD and their care partners to build a high-quality HD natural history study that can be used to accelerate HD research. To learn more, read the press release and community letter published on HDSA.org. If you are interested in learning more about how you can get involved as an HD community member, email HDVoices@hdsa.org.
This Week in HD History
Huntingtin-lowering is being widely explored as a therapy for HD. Several companies are running clinical trials that aim to decrease the amount of harmful huntingtin protein in people with HD, with the goal of slowing down the worsening of symptoms. Just over a decade ago, this approach was just being introduced into the HD literature. A publication from late June 2012 authored by Dr. Holly Kordasiewicz in the laboratory of Dr. Don Cleveland focused on testing a new type of genetic therapy called an ASO in different kinds of HD mice. They showed that treatment with ASOs could prevent “mouse HD” from progressing. This was a huge step towards initiating human trials of drugs like Roche’s tominersen. Dr. Kordasiewicz continues to work on developing drugs for HD and serves on HDSA’s Scientific Advisory Board.
A Golden Age for Biomedical Innovation?
Outside of the direct realm of Huntington’s disease, if you’re looking for some positivity in the world of medical innovation, this New York Times article by David Wallace-Wells discusses the hope and hype behind new technologies that are leading to novel treatments and cures for disease. From CRISPR to cancer, HIV to vaccines, and how COVID reshaped medical research, there’s a lot to celebrate in science, and hope that these innovations will soon extend to hard-to-treat genetic and brain disorders like HD.
