We need 60 more good Huntington's people to get the ACR16 trial done in North America. Do you know that 90% of the more than 400 Huntington's participants from the European trial have petitioned centers so that they may continue ACR16 compassionate use after the trial? This remarkably high number suggests that Huntington families in Europe believe that ACR-16 may be doing something very good.
Why are we in the U.S. and Canada risking our chance to get this drug? Do you know that slow enrollment is the reason 2 out of every 3 clinical trials in the U.S must close before enough information is gathered to bring a new drug forward to the FDA -- because the drug company runs out of money. Each day that we don't enroll is adding to the cost of this multimillion dollar trial.
If we don't fire up 60 more people to join this trial, we may be risking our chance to get this drug.
How hard can enrolling 60 more people be? There are 28 geographic locations in the U.S. and Canada still recruiting for this trial, and if each of these sites worked hard to enroll just 2 or 3 more participants, we'd be over the top.
Every part of the community shares the responsibility for slow recruiting. And it includes every person working in a Center of Excellence and everyone working for HDSA at the national and local level. But it would be a mistake to count on these organizations to move quickly.
Who can make the most difference right now? We Can!
We at the grass roots level may be at the bottom, but we are the important ones who can to get this job done quickly. Every HD family who is aware of this trial must join if we can, and if we can't we must seek out, educate, encourage and provide support to those who can participate. Part of education is to stress the critical importance of participation in the ACR16 trial right now.
- Find the locations where this trial is offered
- Get your local HDSA chapter on board
- Inform and encourage participation in your local support groups and web communities
- If a testing site seems too far, know that transportation costs -- even air fare -- may be covered. To get this trial -- and others to follow -- done we need families outside of centers
- Let your extended families from other areas of the North America know about the importance of this trial
- Make these contacts today. Don't put it off
- Let your local physicians who take care of Huntington families know about the trial.
We need only 60 more good people to get the ACR16 job done in North America. Only we have the power to make a difference - either by joining this trial ourselves or by helping others participate. We must energize our communities to get this job done now -- we otherwise are risking, and might lose the chance for this drug.