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Deborah N. Ader, Ph.D., NIAMS Aderd@mail.nih Larry Fine, M.D., DrPH, OBSSR Finel@mail.nih

RM-04-011 DYNAMIC ASSESSMENT OF PATIENT-REPORTED CHRONIC DISEASE OUTCOMES Pre-Application Meeting January 26, 2004 Rockville, MD. Deborah N. Ader, Ph.D., NIAMS Aderd@mail.nih.gov Larry Fine, M.D., DrPH, OBSSR Finel@mail.nih.gov Call-in: (888) 566-5788. GOAL of RFA.

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Deborah N. Ader, Ph.D., NIAMS Aderd@mail.nih Larry Fine, M.D., DrPH, OBSSR Finel@mail.nih

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  1. RM-04-011DYNAMIC ASSESSMENT OF PATIENT-REPORTED CHRONIC DISEASE OUTCOMESPre-Application MeetingJanuary 26, 2004Rockville, MD

  2. Deborah N. Ader, Ph.D., NIAMS Aderd@mail.nih.gov Larry Fine, M.D., DrPH, OBSSR Finel@mail.nih.gov Call-in: (888) 566-5788

  3. GOAL of RFA Improve assessment of self-reported symptoms and other domains of health-related quality of life across a wide range of chronic diseases

  4. STRUCTURE Collaborative agreement network - Patient Reported Outcomes Measurement Information System (PROMIS) consisting of: • 3-6 Primary Research Sites • A Statistical Coordinating Center • Steering Committee • Scientific Advisory Board

  5. BROAD OBJECTIVES • Develop and test a large bank of items measuring PRO • Create a CAT for efficient assessment of PRO across a range of chronic diseases

  6. BROAD OBJECTIVES • Create a publicly available, adaptable and • sustainable system that will: • Administer a CAT-based PRO questionnaire • or allow researchers to download the CAT • Collect PRO data for research and to update • Provide instant reports

  7. SPECIFIC RESEARCH OBJECTIVES • Develop a core set of questions: • Primarily from existing items • Most common dimensions of PRO relevant to widest range of chronic diseases; special interest in pain and fatigue • Large diverse sample

  8. SPECIFIC RESEARCH OBJECTIVES • Develop common metrics • Create item bank using modern measurement theory • Develop CAT • Create web-based, user-friendly repository • Plan to maximize acceptance • Conduct feasibility studies • Plan for a public private partnership

  9. Primary Research Sites • Identify and define key PRO constructs • Contribute expertise to design PROMIS • Collect data from specified populations • Conduct independent studies that will • complement PROMIS

  10. PRS APPLICATIONS Independent Project • 25-Page research proposal • Maximum Budget: $450,000 total Network Projects • Two Network Concept Proposals • Estimated budget - Total budget for • PRS and Network combined not • to exceed $875,000

  11. Statistical Coordinating Center • Collect, manage, and analyze PRO data • using psychometric, statistical, and • survey research methods • Design and create a use-friendly PROMIS • that protects patient confidentiality

  12. SCC APPLICATIONS • Item Bank Development • CAT Development • PRO Assessment, Data Collection, • Reporting System • Data management, training, and QC • Data analysis • Data confidentiality and system security • Communication • Scientific leadership and dissemination

  13. QUESTIONS?

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