Participation in good clinical studies and trials is the only way to get treatments for Huntington's disease. And efficient enrollment is the only way to get these treatments to Huntington people more quickly. HDTrials.org is a web effort intended to speed and improve communication about clinical trials for our community. By signing up on this site you can receive broadcasts and information about clinical trials in various geographic areas as soon as they begin. Thousands of participants will be needed. We have the opportunity and the power, through this and other efforts to speed enrollment in trials that can bring treatments to our families more quickly.
Why now? Because the need for every willing clinical trial participant is great. Right now, more than 800 HD persons are needed for 4 trials:
- 2-CARE: 600 at 43 study locations
- PRECREST: 80 in Boston
- Memantine: 40 participants at 2 study centers
- Citalopram: 36 in Iowa
And in the next 12 months another 1500 will be needed:
- CREST: Will need 650 participants.
- ACR-16: Will need 400.
- Dimebon: May need 400 more for PHASE 3.
- PREQUEL: Will need 90
And in the Future: CHDI will be entering first clinical trials soon thereafter and will need hundreds more. And the need for large numbers of participants will be ongoing. It is anticipated that these kinds of numbers will be needed continuously for many years to come.
Why Efficiently? Because our enrollment times are long. In fact, for the majority of past trials it has taken longer to recruit participants than the actual length of the trial:
- Minocycline: (118) 12 centers, almost 2 years (16 month trial)
- Dimebon : (90) 15 centers, 10 months (3 month trial)
- Memantine (60), 2 of 3 centers, still recruiting after several years.
- Citalopram: (36) 1 center, still recruiting after several years.
Slow enrollment greatly increases the time that it will take to get treatments. It also greatly increases the expense (millions of dollars) of clinical trials for HD, which may in turn limit the number of drugs that can be tested.
To succeed: Though many methods will be needed to increase clinical trial awareness and interest, HDTrials.org is a very good way to begin. It will:
- 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.
- 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.
Sign up today, and encourage your family and friends!
Every one of us can make the difference.