In an important milestone for research, 23andMe has enrolled 10,000 people to participate in a study focused on understanding the role genetics plays in the onset and progression of Inflammatory Bowel Disease.
In collaboration with Pfizer, Inc, 23andMe’s IBD Study is unique in its size, and its use of genetics in combination with online survey tools to speed discovery. Now that 10,000 people with IBD have joined together to fight this condition, 23andMe researchers can begin their work in earnest.
“I joined 23andMe to share my genetic information with those researching Crohn’s Disease,” one participant told us. “I would love to contribute to a better understanding of this pernicious illness and hopefully, one day, a cure.”
Inflammatory Bowel Disease, also known as IBD, is a chronic autoimmune condition, which includes both Crohn’s disease and ulcerative colitis. It affects more than 5 million people worldwide and can be debilitating. Symptoms include among other things cramps, pain, fever, loss of appetite, bowel problems and severe weight loss. Currently there is no cure.
Although there are treatments, the effectiveness of those treatments varies and that is part of what our researchers want to understand with this study. The hope is that insight from this research will aid in developing more effective ways to treat the condition and map the progression of the illness. Having such a large number of genotyped individuals with IBD offers scientists a rare opportunity. 23andMe’s non-traditional approach to research also is unique for people with IBD who want to participate by allowing them to do so from their homes instead of having to travel to a research facility.
This model makes it easier for researchers to share findings with participants, breaking with the traditional research model and treating people as partners, not subjects. 23andMe also offers the additional benefit allowing participants to learn more about themselves by looking at their results. This in turn feeds engagement, encouraging people to continue their involvement in research as they learn about themselves, and creating a virtuous circle for discovery.
This model for research is what has helped 23andMe to study other conditions such as Parkinson’s disease, Lupus and Myeloproliferative neoplasms. It is also a research model that is being embraced by others, including the NIH’s Precision Medicine Initiative. 23andMe knows from experience that engaged consumers are the key to making this kind of research work.
“We are excited to see the enthusiasm with which people have received this study,” said Joyce Tung, PhD, 23andMe’s vice president for research. “It goes to show that people really want to participate in research with a model in which researchers put more into the relationship.”