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). .
Registries for Evaluating Patient Outcomes
Elise Berliner, Ph.D.
Director, Technology Assessment Program
Center for Outcomes and Evidence
- 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.
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.
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.
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.
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.
- Today's discussion will focus on:
- Updates to Registries for Evaluating Patient Outcomes.
- Developing the RoPR.