Breaking the cycle of underfunded celiac disease research

October 30, 2018

Breaking the cycle of underfunded celiac disease research


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Beyond Celiac joins SSCD to attract investigators to the field

By Amy Ratner, Medical and Science News Analyst

The National Institutes of Health (NIH), a primary source of research money, has historically underfunded celiac disease, discouraging scientists who are starting their careers from investigating the genetic autoimmune condition.

The NIH takes the number of scientists studying a disease into account when giving grants, so the lack of researchers has a negative impact on celiac disease, creating a spiral that has resulted in the condition consistently receiving the lowest amount of federal research funding compared to other gastrointestinal conditions.

Early Career Grant

Beyond Celiac and the Society for the Study of Celiac Disease (SSCD) are partnering to break the cycle through the creation of a grant designed to attract exceptionally promising early career academic investigators to the field of celiac disease research.

Beyond Celiac will provide funding of up to $75,000 per year for two years and the SSCD will manage the award, called the Society for the Study of Celiac Disease – Beyond Celiac Early Career Research Award.

“We at Beyond Celiac recognize that advancing science by creating incentives for those early in their careers is playing the ‘long game,’ but one that will ultimately get us across the goal to find treatments beyond the gluten-free diet, and hopefully, a cure,” noted Beyond Celiac Chief Scientific Officer Marie Robert, M.D.

The SSCD is an organization of medical, scientific and allied health professionals in the field of celiac disease formed to advance research in celiac disease and gluten-related disorders and to improve clinical care, including diagnosis and treatment.

Scientists doing studies in any of the types research in celiac disease — basic, clinical, translational, behavioral or epidemiological – are eligible to apply.

Basic research: study done to further scientific knowledge with the goal of understanding the function of newly discovered molecules and cells, strange phenomena or little understood processes.


Clinical research: study of health and illness in people. It is the way we learn how to prevent, diagnose and treat illness and involves different elements of scientific investigation, including the use of human study participants to translate basic research done in labs into new treatments and information to benefit patients.


Translational research: the process of applying discoveries generated during research in the laboratory, and in preclinical studies, to the development of trials and studies in humans. Also, research aimed at enhancing the adoption of best practices in the community.


Behavioral research: study of the actions and reactions in response to external stimuli. Behavioral scientists look at how behaviors and lifestyle can improve health, prevent illness and reduce symptoms.


Epidemiological research: study used to estimate the frequency of disease and find associations suggesting potential causes of disease.


Overall, the research that will be selected for the grant has to have the potential to transform the understanding and management of the celiac disease, according to the SSCD.

In order to be eligible, researchers must have a Ph.D. or M.D. and have completed their training within the previous 10 years. Applicants also have to have a full-time position at a North American academic institution and the research has to be conducted in an institution in the United States or Canada.

Funding for research critical

Lack of funding for research is often cited as one of the reasons it has taken so long to find a treatment for celiac disease other than the gluten-free diet. At the recent Beyond Celiac Research Symposium, Ciaran Kelly, M.D., director of the Celiac Center at Beth Israel Deaconess Medical Center and a member of the Beyond Celiac board of directors, said the biggest challenge faced by researchers is “Money, money and then money.”

The dismal amount of research funding by NIH was detailed in a review of data over a five-year period during which celiac disease received the lowest amount compared to other gastrointestinal conditions. Additionally, the National Institute for Digestive and Kidney Diseases awarded the fewest number of grants to celiac disease research over the same period, from 2011 to 2015.

The review, published as commentary in the journal Gastroenterology, found that NIH funding, which is the major source of support for research in inflammatory gastrointestinal diseases, showed no association between the estimated prevalence or mortality rates of a disease. In general, NIH support is seen as essential for improving the understanding of health and disease.

The review included celiac disease, irritable bowel syndrome (IBS), Crohn’s disease, eosinophilic esophagitis (EoE), Barrett’s esophagus and non-alcoholic fatty liver disease (NAFLD).

Celiac disease, with a prevalence of about 1 percent and mortality rate of 1.3, the highest among the diseases reviewed, received about $3 million per year. Meanwhile, Crohn’s disease, which had the second lowest prevalence at .25 percent and a mortality rate of 1.1, received about $16 million per year, the highest amount of funding.

The assumption that the gluten-free diet is all that’s needed to treat celiac disease also contributes to its low-funding status.

Evidence the gluten-free diet is not enough

As researchers have increasingly challenged the idea that celiac disease is a rare condition, and some have dedicated much of their work to unraveling unknowns about the condition, the need for new treatments has become clear.

Patients on the gluten-free diet continue to experience symptoms and intestinal damage in combination or separately.

Studies of adult celiac disease patients, including one done at the Mayo Clinic, have shown that even after two years on the gluten-diet, 30 to 60 percent have persistent gut damage. Data also suggests that this is true in more than 33 percent of adults regardless of whether they symptoms or positive celiac disease blood tests. Likewise, one in five children may not heal despite following the gluten-free diet for one year, research has found.

As evidence mounts that the gluten-free diet is not the complete treatment it was once thought to be, Beyond Celiac has focused its mission on the advance of research and acceleration towards the discovery of new treatments and a cure.

In addition to the early career grant, Beyond Celiac has created Go Beyond Celiac, an online community created by people with celiac disease, for people with celiac disease to help propel research by providing the critical patient perspective. You can join Go Beyond Celiac here.

Those interested in applying for the grant can learn more by visiting



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