Researchers investigating celiac disease often have a personal connection to the condition

July 13, 2022

Study participants could benefit from scientists’ personal understanding of celiac disease, study suggests

By Amy Ratner, director of scientific affairs

Most scientists investigating celiac disease are drawn to it because of an interest in understanding the condition or because they see an unmet need, according to a study presented recently at Digestive Disease Week (DDW).

But personal involvement is common in the international celiac disease research community, the study by researchers from Harvard Medical School, Beth Israel Deaconess Medical Center and Boston Children’s Hospital found.

Fourteen percent of celiac disease researchers surveyed said they had been diagnosed with celiac disease, including two researchers who also had a diagnosed family member. Thirty four percent reported having a family member with celiac disease, while 25 percent said a member of their research team was diagnosed with celiac disease

The study was based on a survey of celiac disease investigators, as well as scientists studying type 1 diabetes and inflammatory bowel disease (IBD).

Of 165 celiac disease researchers who responded to the survey, 33 percent ranked an interest in the science as the main motive for pursuing its study, while 32 percent said they were mainly drawn by unmet need. Eighteen percent said personal involvement with celiac disease was the main factor.

Overall, 42 percent said they had a personal connection, which the survey defined as having been diagnosed with celiac disease and/or having a family member or research team member who was diagnosed.

DDW is an annual conference for physicians, researchers and academics in the fields of gastroenterology, hepatology, endoscopy and gastrointestinal surgery.

About half of the celiac disease researchers who responded were women and most ranged in age from 35 to 50. Those studying celiac disease responded to the survey in greater numbers than those studying IBD and type 1 diabetes.

Like celiac disease scientists, IBD and type 1 diabetes researchers ranked an interest in understanding each respective condition as the main motivation for investigating it, followed by unmet need.

Compared to celiac disease investigators, fewer IBD researchers had a personal connection to the disease, 27 percent, while more studying type 1 diabetes reported being personally connected, 51 percent. Type 1 diabetes researchers also most frequently reported that research team and family members had the condition. However, they were far less likely to have been diagnosed with type 1 diabetes themselves, 3 percent. Additionally, respondents studying IBD and type 1 diabetes were predominantly men.

Study authors sent the online survey to a total more than 700 scientists studying the three diseases.

Having a researcher who has celiac disease or has a family member who has celiac disease could have benefits for patients who participate in celiac disease studies, said Amelie Therrien, MD, a study author and a gastroenterologist at the Harvard Medical School Celiac Research Program.

Read more about Therrien’s role in celiac disease research.

“I think there can be a different relationship when you know the person designing or running the study also has celiac disease or lives with someone who does,” she said. “They could have a better understanding of the challenges of living with the disease and what it would entail to have a gluten challenge, for instance, or the importance of having gluten-free snacks during long study visits.”

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