Crohn's & Colitis Foundation of America


733 Third Avenue 5th Floor
New York, NY 10017
800-932-2423
https://registry.fastercures.org/organization-profiles/1005.html?user=10166


   

TRAIN Inventory Profile

Mission
Strategy/Approach
Research Portfolio
Financials
Key Accomplishments
Leadership
Ask Us About
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Mission

The Crohn's & Colitis Foundation of America (CCFA) is a non-profit, volunteer-driven organization dedicated to finding the cures for Crohn's Disease and ulcerative colitis, and to improve the quality of life of children and adults affected by these diseases. It was founded in 1967 by Irwin M. and Suzanne Rosenthal, William D. and Shelby Modell, and Henry D. Janowitz, M.D.
Since our founding over four decades ago, CCFA has remained at the forefront of research in Crohn's disease and ulcerative colitis. Today, we fund cutting-edge studies at major medical institutions, nurture investigators at the early stages of their careers, and finance underdeveloped areas of research. In addition, our educational workshops and programs, along with our scientific journal, Inflammatory Bowel Diseases, enable medical professionals to keep pace with this rapidly growing field. We are very proud that the National Institutes of Health has commended us for "uniting the research community and strengthening IBD research."

Strategy/Approach

We initially supported mainly basic research, but over the last six years continue to grow our translational research portfolio. In addition, we have moved from funding traditional single-investigator-initiated projects to funding consortium-based collaborative research. To guide us in our research investment, every three to four years, we convene thought leaders of the IBD scientific community to identify gaps in IBD research and key research areas for focus in the years ahead.
A current major focus is creation of a centralized research exchange platform that provides the infrastructure to facilitate important researcher-specific IBD questions and allow for effective collaboration between stakeholders through shared research goals including accelerating progress toward precision medicine.

Research Portfolio

The CCFA’s research priorities span the range from basic to clinical research. Basic research efforts consist of investigator initiated grants in areas of IBD, with priority given to those that address the challenges identified by the IBD scientific community, as described previously. Translational activities include funding through the Broad Medical Research Program at CCFA, an investigator-initiated grants program, targeting innovative therapeutic and diagnostic applications; research collaborations including Microbiome, RISK, and Genetics; and pharmaceutical partnering activities to leverage our network with industry resources to discover new drug targets and therapeutics for IBD. Our clinical priorities include investigator-initiated clinical grants and the pilot grants managed and fielded by clinical research alliances with major medical centers and other practices.

Microbiome Initiative:
Goal: Establish mechanistically validated targets and lead molecules for microbiome-based therapy for IBD.
Outcomes: Completed a multi’omic platform to predict disease-associated microbial products. Established and characterized primary epithelial cell lines from normal and IBD subjects. Completed a first-ever comprehensive identification of microbial metabolites changed by human dietary intervention.

Genetics Initiative:
Goal: Establish a pathway-based approach to IBD genetics to enable discovery of potential drug targets and intervention strategies.
Outcomes: Prioritized IBD susceptibility genes and currently conducting a detailed study of genes, proteins, and pathways involved in pathogenesis. Also making progress to define function and molecular mechanisms of IBD risk proteins as potential drug targets.

Risk Stratification in Pediatric IBD:
Goal: Stratification and Identification of immunologic and genetic markers of complicated disease course in pediatric Crohn's disease.
Outcomes: Achieved enrollment targets and 3 year follow-up objective. Outcome analysis underway.

Financials

Fiscal year 2014

  • Revenue: $77,906,231
  • Assets: $32,021,379
  • Grants: $21,553,258
  • Gifts Received: $247,114
  • Total Expenditures: $76,056,888

 

Key Accomplishments

For more than forty years, research supported by CCFA has contributed to the growing body of knowledge and understanding of Crohn’s disease and ulcerative colitis. CCFA is one of the largest private funders of IBD research where today we have invested close to $250 million since inception. CCFA has played a role in virtually every major breakthrough in IBD. Examples are as follows. CCFA research funding has supported discovery of the first gene implicated in Crohn's disease, NOD2, and early research on TNF-alpha, which contributed to the development of infliximab and other biological therapies. CCFA has sponsored comparative drug trials to find new uses for existing therapies. CCFA has contributed to key outcomes in surgery such as a new surgical technique to improve ileoanal pouch surgery by sparing the anal transition zone. CCFA's research investment portfolio also includes targeting specific "hot areas" through requests for applications from researcher such as conducting colon cancer biomarker research.

Recent highlights:

  • Microbiome: Identification of more than 80 chemical compounds (metabolites) made by bacteria in the gut and understanding their role in IBD remissions and flares. 
  • The RISK stratification study, the world's only pediatric IBD inception cohort, is now able to predict which factors can tell us at disease onset whether a particular patient will get complicated disease 3-5 years down the line.
  • CCFA Genetics initiative: Identification of two targets

Leadership

CCFA is governed by a Board of Directors that includes President and CEO, Michael Osso. The board is supported by a group of scientific advisers, the National Scientific Advisory Committee, which includes numerous subcommittees advising on research funding and patient and provider education activities, and also a permanent professional staff.

Staff

  • President and CEO, Michael Osso
  • Chief Scientific Officer, Caren Heller, MD, MBA
  • Vice President, Business Development, Sherri Markus-Kennell

Ask Us About

  • Building research collaborations
  • Facilitating patient engagement in the R&D process
  • Partnering with industry