Related Resources

This section features patient–reported outcomes-related tools, reports, and online resources for researchers and clinicians outside of the PROMIS Network.

• MAPI Research Trust site: http://www.mapi-trust.org/. MAPI Research Trust is a non-profit organization facilitating access to information in the fields of Patient-Reported Outcomes (PRO) and Epidemiology, promoting the use of scientific approaches in these fields and encouraging exchanges between academics, companies, and international organizations around the world.
• Video tutorials on utilizing the Assessment Center’s Online Research Management Software Application: http://www.assessmentcenter.net/Tutorials.aspx
• NCI's Instrument Development & Testing for Quality of Life Measurement: http://outcomes.cancer.gov/areas/measurement/
• National Cancer Institute’s Outcomes Research site: http://outcomes.cancer.gov/
• National Quality Forum – Consensus Development Projects: Patient-Reported Outcomes: http://www.qualityforum.org/Projects/n-r/Patient-Reported_Outcomes/Patient-Reported_Outcomes.aspx
• Patient-Reported Outcome Consortium: http://c-path.org/PRO.cfm. A partnership between the Critical Path Institute, U.S. Food and Drug Administration, and the medical products industry, the Consortium develops, evaluates, and qualifies PRO instruments with the FDA for use in clinical trials designed to evaluate the safety and efficacy of medical products.
• National Quality Measures Clearinghouse (NQMC), Expert Commentary - Quality Measures: Patient-Reported Outcomes for Quality Improvement of Clinical Practice: http://www.qualitymeasures.ahrq.gov/expert/expert-commentary.aspx?id=36851 NQMC is a public resource for evidence-based quality measures and measure sets.
• FIRESTAR: Download a .zip file containing the FIRESTAR: Computerized Adaptive Testing (CAT) Simulation Program and documentation for Polytomous IRT models developed by Seung W. Choi, PhD, (s-choi@northwestern.edu) Department of Medical Social Sciences Northwestern University’s Feinberg School of Medicine.
• PhenX Toolkit: link to a website containing a toolkit that provides standard measures related to complex diseases, traits and environmental exposures.
• Source Code: Download a .zip file containing a software application and development source code called "Assessment Center" © Copyright 2008–2009 David Cella, Richard Gershon, Michael Bass, Nan Rothrock, Rachel Hanrahan.
• NIH Toolbox: http://www.nihtoolbox.org a multidimensional set of brief measures assessing cognitive, emotional, motor and sensory function from ages 3-85, meeting the need for a standard set of measures that can be used as a "common currency" across diverse study designs and settings.
• Quality of Life Outcomes in Neurological Disorders – Neuro–QOL
• NIH Common Fund: Clinical Outcomes Assessment: PROMIS
• The University of Washington Center on Outcomes Research in Rehabilitation (UWCORR) Online seminars have been developed by the Health Services Research & Development Service on a wide range of topics.

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