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 neuropsychologist 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.
“We wanted to make sure that Irish people had the same opportunity to engage in research,” says Patricia Towey, information and services coordinator for the HDAI. “We’re hoping that having Enroll-HD in Ireland will create more awareness among health professionals as well. It will encourage professionals to get involved in research if they see that Irish people are interested in contributing to research.”
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.
New hopes for HD help
Beginning last spring the HDAI began introducing the study to people in the community at support meetings and seminars. HDAI volunteer Brian Moore, a professional cameraman, produced a short video featuring presenter Charles Sabine that briefly explains the study. “It demystifies it for people,” says Towey.
In mid-June the study was featured on a national TV program called Nationwide. “Because it’s a large-scale international study, it gets attention in its own right,” says Pender. “That gets the message out there.” Raising awareness in this way makes it easier to argue for more public funding for HD services, he says.
“Research can be scary for people, but the HD community has been excited.” — Niall Pender
Currently Ireland has few specialized services for HD: There’s only one genetic counselor knowledgeable about the disease, and there’s no multidisciplinary clinic that can address the diverse medical needs that the disease often involves. Instead it’s up to a patchwork of experts. “We’re poorly serviced at the moment for HD,” says Pender. “That was the real importance of getting Enroll-HD here.” He and a colleague, a neurologist in Galway, are exploring the possibility of setting up three specialist sites across the country with multidisciplinary teams familiar with HD care.
In the meantime Pender welcomes the launch of Enroll-HD. “We’re incredibly excited to be a part of it, it’s a big step in terms of getting the services for HD,” he says. “I’ve been amazed by the positivity of the patients. I know that research can be scary for people, but the HD community has been excited about it.
This story was originally published in the Spring 2016 issue of Enroll!