Chouinard is a neurologist and co-director of the André Barbeau Movement Disorders Unit at Montreal’s major university hospital, the Centre hospitalier de l’Université de Montréal (CHUM), one of the largest sites for Enroll-HD.
Your clinic has recruited a huge number of people for Enroll-HD. How do you do it?
We’re following 500 to 600 patients with HD. That’s why we’re so good at recruiting patients for Enroll—we have a lot of patients! We go to Quebec City twice a year, and there are big families there too.
We also do it differently, probably, than other clinics. We like to do weekends, where we’ll see 40 or 50 patients. We find that it’s very efficient. For the patients and families who are working during the week, it’s much more convenient. The Quebec division of the Huntington Society of Canada will come, and the genetic counselor too. It’s all volunteer. It’s nice. It’s like a big family reunion.
You also have a family day—how does that work?
There’s always an update on research. I’ll discuss Enroll-HD, and some of the other research. We pick a subject that will interest the families. In the past, we discussed end-of-life wishes or problems with swallowing. At the end of the session we ask what people want to hear, and we organize the next one according to the wishes of the families. We do that also in Quebec City.
Tell us about your clinic for First Nations people, in remote northeastern Quebec.
About 10 percent of the Innu community there is at risk of HD. We go up there once or twice a year, for three days. It’s a social worker, the director of the Huntington Society, two nurses, another doctor, and the genetic counselor. All the community knows we’re there to see patients, and they’re all coming for the study as well. We see patients but we also try to educate people about the disease.
It’s amazing. It’s changed our life. We’re part of their family there. We appreciate them, they appreciate us. They’re more advanced than many places: They’re going to start a community center for HD, and a respite home. They’re very well organized, because of the way the community is there. We’re trying to reach out to more remote communities—we’ll probably go farther north next year. There’s a remote region where there are 40–50 people affected, and we’re trying to reach them as well.
“It’s rare that people don’t want to participate, especially in Enroll-HD, since it’s not a drug they need to take, and it’s only once a year.” —Sylvain Chouinard
When you invite people to join Enroll-HD, how do you explain it?
It’s usually not a big issue. We just explain what the purpose is of the research, to better understand the disease. It’s rare that people don’t want to participate, especially in Enroll-HD, since it’s not a drug they need to take, and it’s only once a year. We also make sure that we educate people, give them more information about the research and what it means. They all want the same thing: when are we going to find the cure?
And how do you answer that?
We’re getting there, slowly! With this new trial, the gene silencing [therapy now being tested by Ionis Pharmaceuticals], that’s quite amazing. I would never have thought it would be possible 20 years ago. We’re making a lot of progress.
This story was originally published in the Autumn 2016 issue of Enroll!