There has been a relative and eerie quiet in the HD community following the report of the failed trial of dimebon for HD, perhaps because expectations were low after the earlier negative trial in Alzheimer's. Or another explanation is that the family community has lost energy after another failed trial.
Of course no one can be sure whether a new drug will be successful. But learning from the dimebon experience, perhaps we can work towards developing and defining a set of minimal criteria before selecting a drug for clinical trial. And the positive answer to our after-dimebon malaise? Join Cohort or Registry >> Enroll-HD.
What is Enroll-HD? This is the study that will include HD families and HD researchers from many areas of the world. The goals of this study include both "care" and "cure": to foster good clinical care and improve health for patients now, to help with development of studies and tools that will bring new drugs forward, and to speed up recruitment into future clinical trials across the globe.
Importantly, the leaders of this effort from Europe, South America and North America, with funding from CHDI are "up front" developing criteria for best use -- not just for data collected -- but for how human resources (our HD family communities) can be best utilized in studies and trials.
Where do I sign up? Enroll-HD management is still in the early phase of getting this project up and running, but you can get an early start by joining the Cohort study in North America and Australia, or the Registry Study in Europe. Both of these studies will gradually be transferred and combined into Enroll-HD while others are added from South America and Asia.
The energizing answer to dimebon? Join these studies, and build on the momentum we'll need to get new treatments to this generation of HD.