IBD Innovate: Accelerating research with data exchange platforms
Published: March 10, 2020
Although the main purpose of IBD Innovate 2019 was to showcase new IBD products, the Crohn's & Colitis Foundation also wanted to make sure researchers and developers were up-to-date about current developments in data exchange research platforms. Having data exchange platforms openly available to researchers can have a dramatic impact on accelerating the research process. These platforms bring together patient data and samples from large studies and organizes these resources in a searchable format. Without these platforms, it can take researchers years and millions of dollars to simply identify patients for their studies. Platforms like these can identify patients with a simple computer search, and allow researchers to rapidly match their samples with the appropriate studies.
The All of Us Research Program is a new national data exchange platform developed by the National Institutes of Health in collaboration with many partners. The All of Us Research Program aims to recruit data from a million patients by 2024 and are partnering with schools, drugstore chains, and other community-based organizations to make it easy for patients to donate their data. Dr. Elizabeth Cohn, coinvestigator of All of Us and the Director of Nursing Research, Hunter-Bellevue School of Nursing, City University of New York and the Graduate Center, City University of New York, spoke passionately about the importance of diversity and inclusion in medical research during IBD Innovate. As Dr. Cohn explained, a major challenge and imperative in advancing precision medicine—and especially in IBD—is inclusion data and samples from the vast range of patient types and experiences. Currently, many patient data sets ‘over-represent’ people of European ancestry. This can lead to development of drugs that work well for people of European descent or other over-represented groups but may not work as well for other groups.
Dr. Elizabeth Cohn speaking at IBD Innovate
Dr. Cohn acknowledged that many patients are understandably nervous about contributing their genomic data, and added, “The Crohn’s & Colitis Foundation is the model for leading partnerships in precision medicine, in developing public-private partnerships and meaningful relationships with patients. They’ve created the model for how to advance health research.”
In order to further understand the impact of IBD on racial and ethnic minorities, the Crohn’s & Colitis Foundation, in partnership with the Centers for Disease Control and Prevention, is conducting a national study of diverse and underserved populations with IBD. Through the INPUT study, the Foundation will work to determine why certain minority communities seem to be at a particularly high risk for having IBD, as well as for having worse outcomes in IBD.
IBD Plexus® is the Foundation’s groundbreaking initiative to create the premier research exchange in IBD. Angela Dobes, Senior Director of IBD Plexus, explained how IBD Plexus draws data from many different sources, including laboratory studies, molecular studies, patient surveys, case reports, and medical records. The design is both comprehensive and collaborative, enabling researchers to have access to much larger data samples than any one institution or company or study can collect.
Angela Dobes addressing IBD Innovate attendees
Angela said, “our goal is to turn finite samples into reusable resources and allow researchers to mine a huge and growing data field.”
- Why this matters: The way patients experience IBD is incredibly varied. Although everyone with IBD is dealing with an inflammatory disease, the patterns of disease show up very differently from patient-to-patient, which has been a challenge for both diagnosis and drug development. Getting a very broad and deep range of patient data that is recorded in the same rigorous way (so researchers are comparing apples-to-apples) is essential for high quality IBD research.
The Foundation is grateful to Eli Lilly and Company and Celgene Corporation for their generous support and partnership in advancing research through IBD Innovate.
Sheila Roher, MPH, is a science writer for the Crohn's & Colitis Foundation.