ATLANTA - eTradeWire -- APFED has received discouraging notification that the critical research being conducted by the Consortium of Eosinophilic Gastrointestinal Disease Researchers (CEGIR, Grant 3U54AI117804), funded by National Institutes of Health, has come to an abrupt halt. The consequences of this decision will fall hardest on patients and their families, particularly children, who face the greatest disease burden. The disruption of this research risks significant setbacks in care, with serious, lasting impacts on health and quality of life.

CEGIR brings together brilliant and dedicated scientists from across the U.S., working collaboratively with patient advocates to advance research into eosinophilic gastrointestinal diseases (EGIDs). For 11 years, CEGIR has operated with funding from the National Institutes of Health (NIH) through the Rare Diseases Clinical Research Network. During that time, APFED has awarded significant supplemental funding—using contributions from patients and families themselves—to further support CEGIR's vital work.

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The decision to disqualify CEGIR's reapplication for funding consideration is not the result of scientific failure or merit. Rather, it results from administrative decisions tied to newly implemented federal policies and the sudden enforcement of regulations that had neither been previously applied nor clearly communicated.

The consequences are devastating: the sudden end to CEGIR's clinical trials and the halt of disease-specific research. EGIDS have no clearly defined cause, yet they lead to lifelong, often severe illness. The impact on those affected is profound, marked by significant suffering, loss of intestinal function, and diminished quality of life. Patients and families living with rare and chronic EGIDs are directly and immediately harmed by this disruption.

CEGIR's progress over the past 11 years has been extraordinary. In 2022, the first FDA-approved treatment for eosinophilic esophagitis (EoE) became available, thanks in part to research supported by NIH. CEGIR's clinical trials and research programs have generated essential data that has provided the foundation for treatment guidelines and supported FDA approvals. CEGIR's long-term natural history study and trials evaluating emerging therapies are crucial to advancing care and improving outcomes. The CEGIR Trainee Program is vital for developing the next generation of clinician-researchers focused on EGIDs.

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We are deeply disappointed by the abrupt shutdown of more than a decade's worth of groundbreaking work due to shifting administrative directives. APFED supports the responsible use of taxpayer dollars and CEGIR has delivered exceptional returns on investment in the form of diagnostic advancements, treatment development, and improved patient care.

We urge federal leaders and policymakers to consider the real-world consequences of these decisions. We call on Congress to act swiftly and decisively to protect vulnerable Americans—patients with rare diseases—who are left to suffer as vital research initiatives are shut down without warning or recourse. https://www.apfed.org