Enroll-HD is now up and running in Ireland, the first time the country has joined a large-scale international study of the disease in people.
The launch was the combined effort of the Huntington’s Disease Association of Ireland (HDAI) and neuropsychologist Niall Pender, who together put resources in place to launch the study. “There’s a great interest in the HD community,” says Pender, who is principal clinical neuro- psychologist at Beaumont Hospital in Dublin, where the study site is located. “The patients and families are behind us, they’re really keen, because there’s no other major research project in the country.” The first participant in Ireland officially joined the study in November 2015.
Prior to Enroll-HD some clinicians in Ireland had been involved in smaller research projects but the infrastructure wasn’t yet in
place to join a study like REGISTRY, the European observational study that came before Enroll-HD. Such studies usually have specific requirements about how various tests should be conducted and how data is collected and maintained. In order to join, a site needs staff who can be trained up in the specific methods for the study, as well as facilities to conduct the tests.
HDAI helped get this process off the ground with an initial grant. Pender then needed to arrange for the space to see study participants, and for staff who could handle the administrative aspects of it such as documentation and systems. “You need somebody dedicated, to make sure that’s up and running and to answer queries,” he says.
Pender aims to recruit about 100 people in Enroll-HD. “I can’t see that as being too challenging, given the popularity and interest in the HD community at the moment,” he says.
You can read more at the Enroll HD website here: https://www.enroll-hd.org/a-first-for-ireland/