The next 10 years
In 10 years, EHDN has turned itself into an indispensable player in European HD research. With its observational study Registry, it created a platform of expertise, data and biological materials that scientists all over Europe could draw on to fuel their research. Registry’s successor, Enroll-HD, will expand that reach beyond Europe to a large part of the world.
EHDN must now reposition itself to place Enroll-HD at the core of its mission, to support that study as far as possible and bring to it strong and enthusiastic European participation.
In the immediate future, the network’s priorities will be to improve its readiness for clinical trials in Europe in terms of logistics and training, and to make sure that those seeking to use the Enroll-HD platform get optimal performance out of it. In return, we hope to harness those users’ experiences, to feed them back into the platform and so refine and improve it.
The European Huntington’s Disease Association (EHA) will be an invaluable partner in this, because no progress is possible without the participation of HD patients, families and carers.
The EHA’s role complements ours, as it promotes understanding of HD and HD research among those affected by the disease, inspiring them to get involved.
Source: Euro HD