Partnering to Accelerate Science

Partnering to Accelerate Science

IBD Plexus: Partnering to Accelerate Science

 

Forty thousand patients, researchers,
and healthcare providers come together to create $40 million new initiative

IBD Plexus® is the largest and most innovative research and information exchange platform ever created. It will transform how IBD research is being conducted.

IBD Plexus involves every IBD stakeholder, including academic and industry researchers, patients of all ages, and clinicians and other healthcare providers. It is designed to form and nurture collaboration and cooperation among them -- powered by their common drive toward better care, treatments and cures.

Currently in development, this initiative incorporates data from existing CCFA programs, and from a new, prospective cohort: SPARC IBD. IBD Plexus is designed to speed progress toward precision medicine by enabling novel research, leading to better diagnostics, treatments and, ultimately, cures for Crohn's disease and ulcerative colitis.

IBD Plexus is the result of the leadership and expertise of a small group of IBD researchers, combined with the vision of generous funders, most notably The Leona M. and Harry B. Helmsley Charitable Trust. The Helmsley Charitable Trust has provided $2 million for planning the initiative, and has committed $17.5 million to build it out over the next three years, from 2015-2018. Additional support has also been received from industry for key components of the project.

Shifting the Research Paradigm

Convened by CCFA over the years, leading IBD researchers have wanted a centralized, IBD-focused "research exchange." They envisioned a powerful resource that would house, organize and share vast amounts of de-identified patient based data that would grow as participating researchers incorporated their own findings for utilization by other researchers.

Huge amounts of data and information critical to better understanding and treating IBD is produced every day from a variety of sources, including scientific and industry research, patient care clinics, and, increasingly, patients themselves. The problem is, data-gathering activities currently occur sporadically and are uncoordinated and un-sustained. The data itself most often lies in separate silos that are inaccessible to outsiders.

In isolation -- when not linked to each other -- these various data types are of limited value in helping our understanding of IBD. However, when brought together in an organized and comprehensive way, and analyzed using sophisticated bioinformatics technology, this pool of data has the potential to yield extraordinary new opportunities for IBD research as well as for patient disease management and care.