VIDEO: Driving patient-centric data in IBD research: A conversation with the Crohn’s & Colitis Foundation

As real-world evidence continues to play a larger role in healthcare research, the need for integrated, patient-centered data platforms is becoming increasingly important. In this interview, Laura Dormer, Editor of The Evidence Base, speaks with Angela Dobes and Chris Fidyk from the Crohn’s & Colitis Foundation about the research ecosystem IBD Plexus and how patient-driven data initiatives are helping to advance research and improve patient care in IBD and beyond.

You can view the entire video or view a specific question by entering ‘Fullscreen’ or navigate via the ‘Visual Table of Contents’.

Questions:

• 0:00: To start, could you briefly introduce yourselves and your roles at the Crohn’s & Colitis Foundation?
• 1:23: Could you tell us more about IBD Plexus and how it integrates clinical, molecular, and patient-reported data into a unified resource?
• 6:14: Why was it important to make patient engagement a core part of IBD Plexus, and how has that shaped the data you collect?
• 9:06: Can you share any examples where IBD Plexus data has had a significant impact on research or clinical understanding?
• 14:59: Looking ahead, how will IBD Plexus maximize the potential of emerging technologies such as AI and machine learning to unlock new insights and accelerate breakthroughs in inflammatory bowel disease research and patient care?
• 18:46: Can you speak to the partners you are engaging with to support this work? What does future partnership potential look like? 
• 22:25: If you could fast-forward five to ten years, what impact would you most hope IBD Plexus has had on patient care and outcomes?

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Angela Dobes
Senior Vice President, IBD Plexus

Angela Dobes is responsible for the overall success and growth of the IBD Plexus program, including delivering against its core goal of accelerating R&D timelines and advancing precision medicine strategies.

Angela devotes much of her time to advancing high-impact, patient-centered research and is passionate about ensuring research, care interventions and treatments are meaningful to patients. Her work has been funded through organizations such as the Patient-Centered Outcomes Research Institute and The Leona M. and Harry B. Helmsley Charitable Trust. She also strives to elevate the important role patient registries and biorepositories play in the pursuit of high-value research through her roles on external committees and initiatives, including The National Academies of Science, Engineering & Medicine project titled, Data Capacity for Patient-Centered Outcomes Research: An Agenda for 2021 to 2030.

Prior to her experience at the Foundation, Angela worked for clinical technology and pharmaceutical organizations, where she has led implementation of various technology solutions focused on business optimization and accelerating the delivery of new therapies to patients safely.

Chris Fidyk
Executive Vice President, Business Development, Crohn’s & Colitis Foundation

Chris Fidyk leads the Foundation's business development initiatives, leveraging his extensive experience in healthcare and life sciences to drive innovative solutions for patients with inflammatory bowel disease (IBD).

Fidyk brings more than 20 years of experience in the healthcare and life sciences industries to the Foundation. He began his career in sales and marketing at Amgen. Following that, he spent nearly a decade at PatientsLikeMe (acquired by UnitedHealth Group) where he led business development. Most recently, Fidyk spearheaded commercialization efforts at several innovative health data and technology startups, four of which were acquired generating $1.1 billion in realized value to shareholders.

Fidyk holds a BS in computer science from Columbia University and an MBA in entrepreneurship from UCLA Anderson. He and his family reside in Boston, MA.

Disclosures:

The opinions expressed in this feature are those of the author and do not necessarily reflect the views of The Evidence Base® or Becaris Publishing Ltd.

Sponsorship for this Interview was provided by the  Crohn’s & Colitis Foundation