Healthy family members shed light into Crohn’s disease
Recruiting participants—especially healthy ones—for a large-scale, long-term medical research study can be a big challenge.
Dr. Hien Huynh, who is co-leading a multi-site research project on Crohn’s disease, has been able to tackle that challenge with the help of the expert assistance provided by the Women and Children’s Health Research Institute’s research coordinators.
Huynh, who is the director of the division of pediatric gastroenterology & nutrition at the Stollery Children’s Hospital, is working on an international study into the environmental factors that trigger the development of Crohn’s disease, a serious, chronic inflammation of the digestive tract.
Close relatives of people with Crohn’s have a genetically higher risk of developing the disease. About 30 per cent of children with Crohn’s have a close family member with the disease. Huynh’s study—the Genetics, Environmental and Microbial (GEM) Project—monitors parents, children and siblings of Crohn’s patients, in order to find out what causes some family members to get the disease but not others.
To find answers, Huynh and his team need a lot of recruits. Much of the legwork at the Stollery study site has been done by WCHRI research coordinators, such as Ronda Danchak, who has worked with the GEM Project since its outset in 2008. It takes creativity and flexibility to recruit and retain volunteer subjects, who are followed over a number of years, says Danchak. She conducts many of her follow-up visits in outside clinics and even subjects’ homes. “My feeling is, these families already spend enough time at the hospital,” she explains.
The extra effort has paid off. To date, the recruitment numbers at the Stollery GEM Project site are second only to Toronto’s Hospital for Sick Children, which draws from a much larger population base. “Without WCHRI, this study would not have taken off in Edmonton,” says Huynh.
The GEM Project began as a national initiative, but has expanded to include more than 25 sites in North America, Europe and Israel, providing the kind of large-scale population sample that is necessary to produce meaningful data and findings. Huynh confidently anticipates meeting his goal of 5,000 study recruits by next year.
Huynh’s research has been facilitated by WCHRI through the generous support of the Stollery Children’s Hospital Foundation through WCHRI.