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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. 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

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  1. Registries for Evaluating Patient Outcomes Elise Berliner, Ph.D. Director, Technology Assessment Program Center for Outcomes and Evidence

  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

  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

  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

  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

  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

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

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