Summary
- Interested in HD Research? Get Connected with Opportunities to Participate!
- Understanding Clinical Trials: What is a P-value?
- Upcoming Research Webinar: HDF on History and Hope
Interested in HD Research? Get Connected with Opportunities to Participate!
If you’re interested in learning more in 2024 about HD research and how to participate, HDSA has plenty of resources to get started! HDTrialfinder is a clinical trials matching platform that 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. HD Trialfinder is also a tool to receive updates about studies whose inclusion criteria match your profile. By consenting to receive communications from study sponsors, you can learn about studies for which you may be eligible as they arise. Make an account here to get started or check the settings of your existing Trialfinder account to consent to future outreach.
Online surveys are also a great way to make your voice heard and contribute to HD research from wherever you have access to the internet. Whether you are a person with HD, caring for a loved one with HD, at –risk for HD, or someone who is part of an HD family, there are researchers who value your experiences and want your feedback. You can view all available opportunities at https://hdsa.org/hd-research/online-surveys/.
Understanding Clinical Trials: What is a P-value?
There are many factors that determine the success or failure of a clinical trial. One of these is a p-value, a critical statistical measure of whether the positive effects of a drug are greater than the psychological impacts of believing you are taking a helpful medication—the placebo effect. The ALS Therapy Development Institute published an informative explanation of p-values and the statistics that go into a clinical trial. While this article is focused on ALS research, it is still a good resource to learn more about the numbers that help scientists determine the outcomes of clinical trials. Read the full piece here. And see above for ways to participate in HD research!
Upcoming Research Webinar: HDF on History and Hope
Join Dr. Sarah Hernandez, Director of Research Programs at the Hereditary Disease Foundation, for HDF’s first research spotlight webinar of the year, “Huntington’s Disease Research: History and Hope.” The presentation will be followed by an “Ask the Scientist” Q&A session open to all webinar attendees. Register to attend here.
