Our Impact

We’re creating a new future for the millions of adults and children living with IBD. Here is a look of what we accomplished in 2021.

Read the latest issue (Spring 2022) of our Impact Report, published three times a year, for timely updates on our continuing progress to discover cures and change lives.

2021 Accomplishments

Our mission is to cure Crohn’s disease and ulcerative colitis, and to improve the quality of life of children and adults affected by these diseases.

In 2021 alone, the Crohn’s & Colitis Foundation invested $63 million in our mission, the most in Foundation history. Of this amount, more than $32 million was directed to 200+ research projects, bringing the number of projects we have supported since our inception to more than 2,500 and our total investment in research to $446 million.

Accelerating critical research in our search for better treatments and cures

Impact Graphic - "launched CAPTURE IBD"

We’re expanding our understanding of IBD and transforming this knowledge into novel therapies and life-changing products that address unmet patient needs. In 2021, we:

  • Developed a new research initiative focused exclusively on the youngest IBD patients: CAPTURE IBD (the Cohort for Pediatric Translational Research in IBD), which builds on our earlier Pediatric RISK Stratification study, will begin by enrolling 2,000 youth between the ages of 4 and 21. This is a critically important initiative since much of the care provided to kids with IBD has been based on what we have learned by studying adults.

  • Completed study on diet and IBD: Results from our DINE-CD (Diet to INducE Remission in Crohn’s Disease) study found that a Mediterranean-style diet and the Specific Carbohydrate Diet™ appear to improve symptoms and quality of life in adult patients with mild-to-moderate CD. This study was the first large-scale, randomized trial in the U.S. showing that these diets can significantly benefit adult patients with IBD.

    Impact graphic - $446 million invested in research
  • Worked to uncover the roots of fibrosis: Our Fibrosis Initiative focuses on preventing and treating the buildup of intestinal scar tissue, a common IBD complication. Researchers reprogrammed blood cells from Crohn’s disease patients with fibrosis into stem cells to create “mini-guts” in the lab so they can learn more about the role genes and other factors play in fibrosis.

  • Gained insights through our Environmental Triggers program: Researchers made important discoveries about the role of psychological stress in IBD that may help identify patients who could benefit from stress-reducing therapies to improve quality of life.

  • Expanded efforts to accelerate research: We grew IBD Plexus®, the largest IBD database in the U.S., by adding more patient data and biosamples to the repository. Containing data from more than 26,000 patients and more than 200,000 blood, stool, and intestinal tissue samples, IBD Plexus provides the information investigators need to rapidly perform studies that accelerate research that can lead to treatment development.

    Impact graphic - IBD Ventures
  • Launched a new program to learn more about chronic abdominal pain in IBD: Our first-of-its-kind funded research brings together patients, clinicians, researchers, and others to deepen our understanding of the causes and underlying biology of chronic abdominal pain in IBD. Through our request for funding proposal, we selected three research projects in the U.S., U.K., and Canada.

  • Supported research to bring cutting-edge technologies to patient care: Our IBD Ventures program funds new products that promise to reimagine life with IBD. Among the exciting technologies we supported in 2021 are:

    • A blood test that may help with IBD prognosis

    • A “smart” pill that delivers medication directly to diseased gut areas

    • A “smart” ostomy bag that may reduce dehydration-related hospital readmissions

Improving patient quality of life and driving remission rates higher

Impact graphic - IBD SIRQC

We’re spearheading efforts to speed up diagnoses, ensure more patients achieve remission with existing treatments, and help patients manage their IBD. In 2021, we:

  • Launched a new initiative to improve surgical care:
     IBD-SIRQC— the Surgical, Innovation, and Research Quality Collaborative—is the Foundation’s first long-term surgery study and aims to help the 70% of people with Crohn’s disease and 30% with ulcerative colitis who will undergo at least one GI surgery during their lifetime. The study will follow adult patients for two years after their most recent surgery to advance our understanding of the impact of surgery on patient outcomes.

  • Improved patient care strategies: IBD Qorus® brings together providers from more than 50 GI practices across the country to learn from each other and share best practices that lead to positive patient outcomes. These efforts led to an urgent care toolkit that providers can now use to help keep patients out of the emergency room and hospital.

    Impact graphic - patients connected
  • Increased public understanding of IBD: Almost 15% of the U.S. population remembered our IBD public awareness campaign and 96% of them reported that the PSAs helped them understand IBD better. (Foundation Tracking Survey Study–Feb. 2022)

  • Made a positive difference for patients: More than 75% of patients connected with the Foundation stated that we had a positive impact on their patient journey. They also reported better symptom control than non-Foundation-connected patients. (Foundation Tracking Study 2022)

Engaging and empowering patients

We’re leading the charge to help people living with IBD get the information and support they need to live their best life. In 2021, we:

  • Created new resources for veterans: To help the nearly 70,000 former U.S. service men and women with IBD, the Foundation partnered with the U.S. Department of Veteran’s Affairs to create new educational resources to help veterans access treatment and services and get specialized support.

    Impact graphic - camp oasis attendees
  • Educated healthcare providers: To ensure that healthcare professionals have the most current information on IBD research, treatments, and care practices, we continue to grow our IBD Clinical Hub microsite. Monthly visitors increased nearly fivefold in just six months.

  • Offered new information and resources: More than 7,000 people visited our new website resources on diagnostic and prognostic tools, ostomy tips, and biosimilars. Our MyIBDLearning education series attracted more than 10,000 webinar and archived program views.

  • Welcomed a record number of campers to Camp Oasis: More than 1,500 young people participated in Camp Oasis, held virtually in 2021. In surveys conducted before and after camp (Foundation Study 2012–2019), the number of respondents who agreed a lot that the campers were “more open about their disease with friends” increased by 56%.

Improving access to care

We’re committed to serving all members of our diverse IBD community and ensuring they have access to the resources they need to live with and manage their disease. In 2021, we:

Impact graphic - step therapy laws
  • Bolstered diversity and inclusion efforts: We launched a Spanish-language section of our website to provide needed resources for patients in the Hispanic/Latino community. We held listening sessions and targeted Facebook Live video chats to better understand and begin addressing other needs of underserved communities.

  • Influenced important legislation: Five states passed step therapy reform legislation, making it easier for patients to get medications prescribed by their provider without having to try and fail with other less expensive therapies first. The Foundation has been instrumental in passing step therapy laws through our work with advocates, legislators, and other partner organizations. There are now 31 states with step therapy laws.

Click here for a printer-friendly version of our 2021 Accomplishments