Registries for evaluating patient outcomes
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Registries for Evaluating Patient Outcomes. Elise Berliner, Ph.D. Director, Technology Assessment Program Center for Outcomes and Evidence. Agenda. Overview of the Registry of Patient Registries ( RoPR ) Project Elise Berliner, Ph.D., Task Order Officer

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Registries for evaluating patient outcomes

Registries for Evaluating Patient Outcomes

Elise Berliner, Ph.D.

Director, Technology Assessment Program

Center for Outcomes and Evidence


Agenda

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


Registry of patient registries ropr project

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

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

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

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

Today’s Discussion

  • Today’s discussion will focus on:

    • Updates to Registries for Evaluating Patient Outcomes

    • Developing the RoPR


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