IBD Partners is a patient-powered research network and an online registry with more than 15,000 adult IBD patients from across the country. There is a parallel registry of over 900 kids and teens.
The registries are comprised of patient-reported data captured via a series of online surveys on topics including diet, treatments, and other issues concerning patients’ disease management and quality of life. In addition, this study also allows patients to connect their mobile health applications and wearable devices such as Fitbit.
IBD Partners also puts an emphasis on the patient voice, allowing them the ability to generate and vote on research topics to aid researchers in generation of research questions, which they can then leverage the database to answer.
Data / infrastructure are valuable for:
- Quality of life research
- Treatment patterns
- Environmental / dietary studies
- Protocol feasibility / protocol design
Study Lead Co-Principal Investigators
- Robert S. Sandler, MD, MPH -- University of North Carolina
- Michael D. Kappelman, MD, MPH -- University of North Carolina