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
- 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:
- 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, (email@example.com)
Department of Medical Social Sciences Northwestern University’s Feinberg School
- 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.
The links to other internet sites included in this site are provided as a service
to our visitors. A link does not imply endorsement or support, nor does the PROMIS
Network endorse, warrant or guarantee the products, services or information described
or offered at these other internet sites.