Three studies presented at major medical conferences this month demonstrate how patient voices are shaping the development of celiac disease treatments—and potentially speeding their arrival. The research, announced by the Celiac Disease Foundation, shows that direct input from celiac patients is helping drug companies design better trials, identify meaningful outcomes, and understand the true burden of living gluten-free.
For families like mine, this matters because no approved drug treatments exist for celiac disease. The gluten-free diet remains the only option—and it’s exhausting. Accidental exposures happen. Symptoms persist. Social events become minefields. The daily work of reading every label, calling every restaurant, and advocating at every school function never ends.
Drug companies working to develop celiac treatments need to understand that reality. These three studies show they’re starting to listen.
What This Means for You
The Celiac Disease Foundation partnered with pharmaceutical companies to conduct research using iCureCeliac, the patient registry we’ve covered before. The studies were presented at Digestive Disease Week (DDW) 2026 and the International Society for Pharmacoeconomics and Outcomes Research (ISPOR) 2026 conference.
Here’s what makes this significant: when drug companies design clinical trials, they need to know which outcomes actually matter to patients. Is it fewer symptoms? Better quality of life? Less anxiety about cross-contact? The ability to eat out without fear? Patient registries provide this information directly from people living with the disease.
One study examined how celiac disease affects work productivity and healthcare costs. Another looked at quality of life measures in patients experiencing persistent symptoms despite following a gluten-free diet. A third focused on real-world experiences of people enrolled in clinical trials. All three used data from patients who volunteered information through iCureCeliac.
This approach helps pharmaceutical companies understand the gap between how celiac patients should feel on a gluten-free diet and how they actually feel. That gap—the persistent symptoms, the ongoing anxiety, the reduced quality of life—represents what new treatments need to address.
Key Takeaways
- Three studies using Celiac Disease Foundation patient data were presented at major medical conferences in May 2026
- The research helps drug companies understand which treatment outcomes matter most to patients
- Patient registries like iCureCeliac connect researchers directly with people living with celiac disease
- This kind of real-world evidence can speed drug development by focusing trials on meaningful endpoints
- The work demonstrates how patient advocacy organizations can actively shape the research agenda
The Science
Want to understand how this actually works? We’ll walk you through the technical details below and define every term. No medical degree required.
Why Patient-Reported Outcomes Matter
Clinical trials traditionally focus on biomarkers—measurable biological indicators like antibody levels or intestinal damage visible on biopsy. These matter, but they don’t capture the full picture of living with celiac disease.
Patient-reported outcomes (PROs) are measures that come directly from patients about how they feel and function. These include symptom severity, ability to work, social participation, and overall quality of life. The FDA increasingly requires PRO data in drug approval applications because biological improvement doesn’t always translate to feeling better.
For celiac disease, this distinction is crucial. A patient might have healed intestinal villi but still experience fatigue, brain fog, or anxiety about gluten exposure. Conversely, someone might report feeling better even before antibody levels fully normalize. Both pieces of information guide treatment development.
How Patient Registries Support Drug Development
The iCureCeliac patient registry functions as a longitudinal database where people with celiac disease volunteer information about their diagnosis, symptoms, dietary adherence, quality of life, and healthcare experiences. Participants complete surveys periodically, creating a timeline of real-world data.
Pharmaceutical companies can partner with the Celiac Disease Foundation to access this anonymized data (with appropriate permissions and oversight). This serves several purposes:
Study design: Understanding which symptoms are most common and burdensome helps companies choose the right endpoints—the specific outcomes a clinical trial will measure. If registry data shows that 60% of celiac patients on a gluten-free diet still experience significant fatigue, fatigue becomes a relevant endpoint.
Recruitment: The registry connects researchers with potential trial participants who have already indicated interest in celiac research. This accelerates enrollment, which is often the slowest part of clinical trials.
Comparative data: Registry participants who aren’t in clinical trials serve as a comparison group, showing what “typical” celiac disease management looks like in the real world versus the controlled environment of a trial.
The Three Studies
While full details weren’t provided in the announcement, the studies presented at DDW and ISPOR examined:
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Work productivity and economic burden: This type of research quantifies how celiac disease affects employment, including missed workdays, reduced productivity while at work (presenteeism—being physically present but functioning below capacity), and associated healthcare costs. This data helps demonstrate the economic value of effective treatments.
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Quality of life in non-responsive celiac disease: Some patients continue experiencing symptoms despite strict gluten-free diet adherence—a condition called non-responsive celiac disease. Understanding the quality of life impact in this population helps identify which patients might benefit most from pharmaceutical interventions.
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Real-world clinical trial experience: This research likely examined barriers to trial participation, patient experiences during trials, and retention rates. Understanding why patients drop out of trials or struggle to participate helps improve future study designs.
The Bigger Picture
This work represents a shift in how medical research operates. Historically, researchers and pharmaceutical companies designed studies based on what they thought was important, then recruited patients to participate in those predetermined protocols.
The patient registry model inverts this relationship. Patients provide ongoing data about their actual experiences, and that data shapes which questions researchers ask and how trials are designed. The result is research more likely to produce treatments that address real needs.
As Marilyn Geller, who leads the Celiac Disease Foundation’s research initiatives, noted when appointed to the National Health Council Research & Programs Committee, patient-centered research represents the future of medical innovation. These three studies demonstrate that future arriving in practice.
Why This Matters for Advocacy
Patient registries accomplish something no individual family can: they aggregate thousands of voices into evidence that drug companies and regulators cannot ignore.
When I advocate for my son—at school, at restaurants, with family members—I’m speaking for one child. When the Celiac Disease Foundation presents registry data showing that thousands of patients experience persistent symptoms, reduced work productivity, and diminished quality of life despite following a gluten-free diet, that speaks with statistical power.
This is the work we’ve seen supported by initiatives like the federal research funding advances that help establish the infrastructure for patient-centered research.
Drug development moves slowly. Getting a treatment from concept to FDA approval takes years and costs hundreds of millions of dollars. Patient registries help ensure that when pharmaceutical companies make those massive investments, they’re targeting the right problems with the right solutions.
How to Participate
If you or someone in your family has celiac disease, consider joining the iCureCeliac patient registry. Participation involves completing periodic surveys about symptoms, diet, quality of life, and healthcare experiences. All data is anonymized and used only for research purposes with appropriate oversight.
The registry also connects members with opportunities to participate in clinical trials, though enrollment is entirely voluntary. Even if you never join a trial, your survey responses contribute to the collective data that shapes celiac research priorities.
More information is available at the Celiac Disease Foundation website.
Related Coverage
- Celiac Disease Foundation Launches Venture Fund to Transform the Future of Celiac Disease
- Marilyn Geller Appointed to National Health Council Research & Programs Committee
- How Federal Research Funding Is Advancing Celiac Disease Science
References
- Celiac Disease Foundation. “How the Celiac Disease Foundation and Biopharma Partners Are Turning Patient Voice Into Scientific Evidence.” May 22, 2026. https://celiac.org/2026/05/22/celiac-disease-foundation-and-biopharma-partners-are-turning-patient-voice-into-scientific-evidence/