Addressing unmet patient needs in IBD research

January 28, 2019
Posted by: Rebecca Kaplan


For over five decades, the Crohn’s & Colitis Foundation has been leading the charge to find cures for Crohn’s disease and ulcerative colitis, and to improve the quality of life for patients. We’ve made incredible strides through our research initiatives, including:

  • Funding research discovering the importance of TNF-alpha and its role in IBD. Antibodies to this immune system chemical led to a number of groundbreaking biologic therapies, including infliximab (Remicade) and adalimumab (Humira).

  • Supporting research discovering NOD2, the first gene identified as relevant for Crohn’s disease, and launching the Genetics Initiative, which has helped identify 215 genes susceptible to developing IBD.

  • Establishing the Microbiome Initiative to study how intestinal microbiota contribute to the onset and progression of IBD. This research is helping lead the way to precision medicine for IBD.

  • Creating IBD Qorus to develop a quality of care standard for IBD treatment across the United States to improve patient quality of life.

  • Developing IBD Plexus, the largest IBD research database uniting clinicians, scientists, educators, industry partners, and patients to accelerate progress in research.

  • Launching the Pediatric RISK Stratification Study, a study of the largest group of pediatric patients in the history of Crohn’s disease from the time of diagnosis. The study has identified biomarkers that can predict disease course and severity in kids with Crohn’s at the time of diagnosis.

But have you ever wondered how the Foundation prioritizes what research to work on?

It all began in 1990 when the Foundation convened a meeting of leading IBD researchers to update the Foundation’s research agenda and identify new priorities in IBD research. Through this meeting, research priorities and resources necessary to reach these goals were identified. The meeting produced a manuscript known as Challenges in IBD Research, which became the research roadmap for not only the Foundation but for the IBD community at large, defining a path for moving research from the bench to the bedside.

Nineteen years later, Challenges in IBD Research is still guiding our research agenda. Every five years, we hold strategic meetings with scientists from academia, industry, leaders from other research foundations and members of the Foundation's National Scientific Advisory Committee (NSAC), and patients and caregivers to produce an updated Challenges in IBD Research. The final version of the document guides the Foundation’s funding and research strategies and provides guidelines for researchers planning to apply for Foundation funding. In addition, it informs research reviewers and patient communities about the Foundation’s priorities in IBD research and in addressing unmet patient needs.

So where does Challenges in IBD Research stand now? Last year, we recruited and convened 100 scientists, pediatric and adult gastroenterologists, surgeons, bioengineers, industry partners, and patients and caregivers, and formed five multidisciplinary workgroups to begin to work together on the next iteration of Challenges in IBD Research. The workgroup reviewed the 2013 Challenges document to assess the progress made (spoiler alert – a lot was accomplished!), and identified five main focus areas to address unmet needs over the next five years:

  1. Preclinical human IBD mechanisms

  2. Environmental triggers

  3. Novel technologies

  4. Precision medicine

  5. Pragmatic clinical research

Our 2019 Challenges in IBD Research manuscript is almost complete—we are currently seeking public comment on the draft to take into account the diverse perspectives of the many individuals affected by IBD and dedicated to improving care. Public comment is being accepted through February 25. Once the comment period closes, we will review and incorporate the comments into the manuscript and publish it for all to read and refer to. We hope to have the final draft published late this spring or early summer.

Click here to learn more about the Foundation’s research initiatives.

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