Registries for Evaluating Patient Outcomes (Text Version)

On September 19, 2011, Elise Berliner made this presentation at the 2011 Annual Conference. Select to access the PowerPoint® presentation (750 KB). .

Slide 1

Registries for Evaluating Patient Outcomes

Elise Berliner, Ph.D.
Director, Technology Assessment Program
Center for Outcomes and Evidence

Slide 2

Agenda

• Overview of the Registry of Patient Registries (RoPR) Project:
  • Elise Berliner, Ph.D., Task Order Officer.
• Updates to Registries for Evaluating Patient Outcomes: Quality Improvement Registries:
  • Richard Gliklich, M.D., Senior Editor.
• Protection of Registry Data from Litigation and Other Confidentiality Concerns for Providers and Manufacturers:
  • Jane Hyatt Thorpe, J.D., Lead Author.
• Developing the Registry of Patient Registries:
  • Dan Levy, M.S., Chief Technology Officer, Outcome.

Slide 3

Registry of Patient Registries (RoPR) Project

• Primary Objective: Engage stakeholders in the design and development of the RoPR.
• This project also includes 4 secondary objectives designed to support the efficient use of high-quality registries for clinical research:
  • Funded under the American Recovery and Reinvestment Act of 2009.
  • Covers 5 major tasks, to be completed between 2010 and 2013.
  • Awarded to the Outcome DEcIDE Center.

Slide 4

RoPR Tasks 1 and 2

• Task 1: Develop the Registry of Patient Registries:
  • Engage stakeholders in the design and development of the RoPR, a searchable central listing of patient registries in the U.S. that is compatible with ClinicalTrials.gov.
• Task 2: Outcome Measures Framework:
  • Produce a framework for standardizing outcome measure definitions that may be used as a resource in various systems such as the RoPR.

Slide 5

RoPR Tasks 3 and 4

• Task 3: Archiving Expired Registries:
  • Develop a white paper on the feasibility of and potential strategies for a voluntary data repository for expired registries.
  • Final paper submitted in August 2011.
• Task 4: Third edition of "Registries for Evaluating Patient Outcomes":
  • Expand the User's Guide to address 11 new topics and update existing chapters and case examples.

Slide 6

RoPR Task 5

• Task 5: Web-Based Collaborative Registries Forum:
  • Develop a paper exploring whether a Web-based forum on registries would encourage useful discussion, sharing of best practices, and debate on new challenges.

Slide 7

Today's Discussion

• Today's discussion will focus on:
  • Updates to Registries for Evaluating Patient Outcomes.
  • Developing the RoPR.