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Design New Patient Registry Models that Harmonize Multiple Data Sources to Promote Sustainability

December 5-6, 2017
  • Philadelphia, PA

CBI’s 3rd Annual Patient Registries Summit convenes multiple stakeholders to examine current trends and challenges in designing and sustaining patient registries. Join bio/pharmaceutical, medical device and non-profit organizations as they explore best practices in sustainable registry design and consider the value of collaborations to gather and share real world-evidence insights from clinical, economic and observational data to support both clinical care and drug development.


  • Advance analytics capabilities to make more informed
    treatment decisions
  • Scale the benefits of registries across multiple stakeholders
    while protecting patient privacy
  • Stay abreast of global regulatory perspectives on registries
    for clinical development and post-approval assessment
  • Promote and execute sustainable registry models through
    collaborations between public, private and industry partners
  • Hear how patient registries are used to support rare disease
    clinical development programs
  • Learn about Shire’s PARADIGHM (Physicians Advancing
    Disease Knowledge in Hypoparathyroidism) Registry for
    subjects with chronic hypoparathyroidism
  • Connect disparate data sources like EMRs, unstructured data
    or extract data from clinical notes to optimize registry data
    from the source
  • Consider the impact of natural history data on decision making
    in the clinical development process
  • Drive more meaningful outcomes and better treatment options
    by designing patient-centric registry models

Previous Attendee Acclaim:

It is important to have a meeting like this that brings registry-experienced folks together to share information on the wide breadth of registries, to share lessons learned on past studies and to shed light on the directions registries are evolving.

Senior Director Registries, US Medical Affairs, Celgene

The passionate energy of the presenters and
attendees was very inspiring.

Senior Director, Program Management, PROS Foundation

I transitioned from clinical research to project manager for our rare disease registry. This conference gave me a really good overview of the different types of registries.

Project Manager, Sanford Research