June 2019

June 4, 2019


Note from Marie Robert, MD, Chief Scientific Officer

It’s been an especially busy time for the Beyond Celiac science department in recent weeks. We laid out our new science plan, which will drive our work in achieving the Beyond Celiac mission of accelerating new treatments and, ultimately, finding a cure for celiac disease.

You may have tuned into our third annual Beyond Celiac Research Symposium via the webcast, or perhaps you even attended the symposium on the University of Pennsylvania campus. If you weren’t able to do either, you can still watch the symposium webcast or read about it on our research news feed.

The main message that came out of the symposium is that the patient voice, your voice, really does matter. At times you may feel the celiac disease research world is far removed from your own world. The experts on our panel emphasized how critical you, the patient or caregiver, are if we ever want to get past the point where a new treatment is that elusive ‘five years away’.

While you may feel scientists and pharmaceutical companies are not taking what you want in a treatment into account when they conceive of a drug, or design a clinical trial to test it, the opposite is true. In fact, researchers and drug companies know they will not get approval for a treatment from the U.S. Food and Drug Administration unless they can demonstrate patients not only need it, but want it.

The FDA will evaluate whether each of the drugs currently in the celiac disease drug pipeline has enough promise to help enough people, Joe Murray, MD, of the Mayo Clinic, said at the symposium. Based on a long career both treating patients and doing research, Murray said he is convinced there is “substantial need.”

A number of drugs to treat celiac disease are moving through the phases of clinical trial that Murray outlined at the symposium. They work in a variety of ways at different points in the process triggered by gluten when someone has celiac disease.

Linda Deal, MS, whose role at the pharmaceutical company Pfizer is to work on patient centered outcome assessments, said the patients’ voice is being “legitimized and listened to” by drug companies, in part because the 21rst Century Cures Act of 2016 gives patients a greater say in clinical trials.

Those who have celiac disease are making their desire for a new treatment clear. When the Chicago Celiac Disease Center surveyed about 200 celiac disease patients, 90 percent said they want a treatment that will allow them to live without the fear of cross contact in their gluten-free diet, said Sonia Kupfer, MD, a gastroenterologist at the Chicago center.

But how do you share what you want and need with a researcher working on a clinical trial? You can volunteer to be a study participant by responding when Beyond Celiac puts out the word that a study is looking for patients. The National Institutes of Health maintain a searchable database of clinical trials, including those related to celiac disease, and Beyond Celiac has trial finder, both of which you can find on our website.

Deal advised that if you do want to participate, you should make sure you have a full understanding of how the trial would work and what your commitment would be. You can also sign up for Go Beyond Celiac, our patient registry and platform. When you do, you’ll help create an accurate picture of the celiac disease journey and experience by answering questions about what it’s like to have celiac disease.

Additionally, you can support the accelerated efforts of Beyond Celiac to spur research into new treatments. In 2018, we joined with the Society for the Study of Celiac Disease to award a $150,000 two-year grant. The grant went to  a scientist studying the impact of celiac disease on the health and quality of life of children diagnosed with celiac disease through an existing mass screening program.

Currently, our newly formed Scientific Advisory Council, a multi-disciplinary group of leaders in the field of research, is reviewing applications for two additional grants that will be awarded this month. Over the next three years, these grants will total an ambitious $454,000 in Beyond Celiac funding for research.

The Beyond Celiac Science Plan to accelerate therapies, which I put together after becoming the first- ever chief scientific officer at a celiac disease advocacy group, guides the decisions Beyond Celiac makes in its quest to make new treatments a reality. Go Beyond Celiac, my position as CSO, formation of the scientific advisory council and our focus on funding research are key components of the science plan.

But we can’t make it over the hurdles to a new treatment without your voice, your participation and your support. I, and everyone at Beyond Celiac, hope you will join us in making life better for all celiac disease patients.


Marie Robert, MD

Beyond Celiac Chief Scientific Officer