HDTrials.org is the web initiative of major Huntington organizations and volunteer groups from the United States and Canada that includes HDAdvocacyCenter, HDDrugworks, Huntington's Disease Society of America, Huntington Society of Canada and the HDlighthouse. All have come together to provide unified support for clinical research because never before in the history of Huntington's disease has there been a time when so many potential treatments are in, or planned for clinical trials.
Just as it took the collaborative efforts of many Huntington families and scientists to find the gene more than a decade ago; it will take great and sustained clinical research efforts from all organizations, and most importantly from large numbers of Huntington volunteers to move research to where it matters most: treatments for people. Every single clinical trial volunteer is a hero for this generation.
To enable clinical research participation, the HDTrials.org web site will perform two functions:
- Provide quick notification to Huntington families of opportunities for participation in clinical trials and studies through a confidential email list. This information can speed the time it takes to recruit participants. and:
- Create a separate voluntary and confidential recruitment list using only zip code as identifier. This information will help our scientists identify locations where subjects for clinical trials are available.
There can be no treatment advances in Huntington's without clinical trials. Vitally important are clinical studies that increase the understanding of the natural course of the disease. Results from these studies: PREDICT and COHORT in the United States and Canada, and TRACK-HD in Canada and Europe will help find the best tests (biomarkers and rating scales) that can be used to speed future trials that test drugs. Already, several hundred clinical trial volunteers are needed for ongoing drug trials; and even larger numbers will be needed for those that are planned.
The more efficiently we enroll every single participant for every trial, the more quickly we will have results—and treatments for Huntington's families. HDTrials.org will help meet recruitment goals by getting information out quickly, and by creating a voluntary listing. Please sign up today—and encourage your family members and friends in the HD community to do the same. Remember, that together we have the power to speed treatments for Huntington families.