By 2015 Enroll-HD was underway on four continents, in some sites for as long as three years. With so many sites in so many nations it was time for the core personnel to meet up again for an investigator meeting. Getting everyone together ensures that every site is up to date and that each is conducting the study the same way. The meetings act like glue to hold this very large study together.
But since Enroll-HD takes place all over the world, it isn’t practical to convene everyone at one meeting. Instead five separate site investigator meetings were held in 2015; one each for Australia/New Zealand, North America, the UK (including Scandinavia), Western Europe and Southern Europe. (There wasn’t one in Latin America because only a few study sites are up and running.) Between a few dozen and more than 100 people involved in running Enroll-HD attended each two-day meeting; the largest was in Madrid, with 138 people. Attendees included the principal investigator and study coordinator from each site, as well as staff who work with study participants.
The meetings included updates on the progress of the study, new and refresher training, and reviews of protocols. Talks focused on the idea of Enroll-HD as a platform and how it can speed recruitment for future clinical trials. At the European meetings, teams described research projects that tap into the data now available from the study.
The North American meeting was held in Tampa, Florida in the US in collaboration with the annual Huntington Study Group (HSG) meeting. The two meetings are a natural fit, says Liz McCarthy, director of special programs at HSG, because both bring together similar networks of investigators and site staff to share updates and participate in education and training.
“It makes sense, because 80 to 90 percent of Enroll-HD sites in North America are also HSG sites,” she says. “It’s mutually beneficial for both groups to have that meeting together.”
At the Tampa meeting, presentations included a panel session of the North American members of the Enroll-HD steering committee, including Martha Nance, MD, director of the HDSA center of excellence at Hennepin County Medical Center Minneapolis, and neurologists Jody Corey-Bloom, MD, PhD, of the University of California, San Diego, and Mark Guttman, MD, FRCPC, of the Centre for Movement Disorders in Toronto. They discussed participant recruitment and what motivates people to get involved in Enroll-HD.
The HSG is a nonprofit research organization that facilitates clinical research studies and trials for HD, with a network of about 400 investigators, coordinators and clinicians across the world, primarily in North America. The group supports research, education and training for its own membership and for the larger HD professional community. Its annual meeting includes HSG members, advocacy groups, industry representatives, and HD family members. This year brought its largest registration so far, with 380 people over the course of 4 days.
The next set of Enroll-HD investigator meetings will take place in two to three years.
This story was originally published in the Spring 2016 issue of Enroll!