If you have Crohn’s disease and have healthy children or siblings, they could help unlock the key to what causes this inflammatory disease, which primarily attacks the gastrointestinal tract. A Canada-wide research project is trying to find the cause of Crohn’s disease by following the healthy siblings and offspring of those with the disease.
The GEM Project was among the topics of discussion at a Crohn’s/colitis workshop held at the Yarmouth Regional Hospital Thursday, Nov. 15.
Nova Scotia is a good place to look for volunteer subjects. Kelly Phalen Kelly, a nurse practitioner from the Capital Health district, told the audience that Canada has one of the highest rates of incidence of Crohn’s disease in the world and Nova Scotia has the highest incidence rates in Canada.
“That makes us have the highest reported [incidence] rates in the world,” she said.
The GEM study (which stands for genetics, environment, microbial) hopes to help explain why.
Brad MacIntyre is a representative of the GEM study’s Halifax research site. Noting that the theory of causation continues to evolve, he explained that current thinking suggests that Crohn’s disease occurs in genetically pre-disposed people when a triggering event causes the body’s immune system to go into overdrive.
“It is a relationship between your genetic makeup (the genetic information you receive from your parents), your mucosal immune system, your own body’s reaction to the organisms in your gut,” he told an audience of about 50 people, most of whom have Crohn’s disease or ulcerative colitis.
Researchers are hoping, by focusing on family members, they will uncover clues about what triggers the development of Crohn’s disease. That’s because those family members are 17 per cent more likely to develop the disease than someone without a familial relationship.
Crohn’s is a complex disease that develops over time. By the time someone is diagnosed, the disease has often been active for a long time and it is difficult to identify triggers. The microbial makeup in the gut of someone with Crohn’s is often much different from that of a healthy person. The question is: does Crohn’s cause the changes or are the differences what help contribute to the development of the disease?
The research will look at how healthy relatives differ from the Crohn’s patient, but it also expects to identify emerging cases of Crohn’s. If there is a broad enough research base, it can be expected that some healthy individuals will develop the disease while part of the study. If new cases are identified within the research cohort, researchers will have a goldmine of data available that could lead to a better understanding of what causes the disease.
The $5.5-million research project is being funded by the Crohn’s & Colitis Foundation of Canada.
Dr. George Tolomiczenko is the foundation’s executive director of research and scientific liaison. He is quoted in a recent foundation article as saying, “This is the broadest way to systematically look for the triggers of the disease.”
GEM’s initial five-year goals are to enrol 5,000 participants – children and siblings of people with Crohn’s disease, aged between six and 35. The Crohn’s patient must sign on to the program and provide consent for researchers to review their medical file. That’s it for them. Then the healthy relatives enrol.
According to the study’s website, “Each participant supplies blood, urine and stool samples and answers an in-depth questionnaire about past environmental exposures, eating habits and medical history. They must also be available for telephone updates every six months.”
Everything except the blood work can be collected at home and a kit is available for those who enroll.
If the study attracts enough subjects from southwest Nova Scotia, MacIntyre said he would return in the spring to obtain the blood samples, alleviating the need to travel to Halifax to have that part of the intake assessment completed.
For more information about the GEM project, or to enrol, contact www.gemproject.ca or call the IWK GI research office toll free at 1-877-3422.