NIH to Develop Network for Quantifying Patient-Reported Outcomes

Overview

As part of the NIH Roadmap for Medical Research, the National Institutes of Health (NIH), part of the Department of Health and Human Services, is providing approximately $37 million for fiscal years 2004-2008 to fund six primary research sites and a statistical coordinating center for a Patient-Reported Outcomes Measurement Information System (PROMIS) network. This trans-NIH initiative, managed by the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS), aims to develop new ways to measure patient-reported symptoms such as pain, fatigue, physical functioning, and other aspects of health-related quality of life across a wide variety of chronic diseases and conditions.

“There is a pressing need to better quantify clinically important symptoms and outcomes that are now difficult to measure,” says NIH Director Elias A. Zerhouni, M.D. “Our clinical research communities would benefit greatly from efficient, consistent, well-validated approaches to measuring these and other subjective outcomes.”

Clinical measures of health outcomes such as x-rays and lab tests have minimal relevance to the day-to-day functioning of patients with such chronic diseases as arthritis, multiple sclerosis, and asthma, as well as chronic pain conditions. Often, the best way patients can judge the effectiveness of treatments is by changes in symptoms. One goal of the PROMIS initiative is to develop a set of publicly available, computerized adaptive tests for the clinical research community.

“This initiative has special relevance for our institute because the diseases that fall under our mission often involve pain, fatigue, and other difficult-to-measure quality-of-life outcomes,” according to Stephen I. Katz, M.D., Ph.D., director of the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS). “Having a test to measure changes in these symptoms will enhance clinical outcomes research and ultimately clinical practice.”

David Cella, Ph.D., of Northwestern University is running the statistical coordinating center. The principal investigators for the six primary research sites are: Dagmar Amtmann, Ph.D., of the University of Washington in Seattle; James Fries, M.D., of Stanford University; Darren DeWalt, M.D., M.P.H., of the University of North Carolina at Chapel Hill; Paul Pilkonis, Ph.D., of the University of Pittsburgh; Kevin Weinfurt, Ph.D., of Duke University; and Arthur Stone, Ph.D., of Stony Brook School of Medicine. These investigators are working together to develop measurement instruments to meet the needs of clinical researchers across a wide variety of chronic conditions.

The NIH Roadmap is a series of far-reaching initiatives designed to transform the nation's medical research capabilities and speed the movement of research discoveries from the bench to the bedside. It provides a framework of the priorities NIH must address in order to optimize its entire research portfolio, and lays out a vision for a more efficient and productive system of medical research. For more information about the NIH Roadmap, please visit the Web site at http://www.nihroadmap.nih.gov.

For more information, please contact the Office of Communications and Public Liaison in the National Institute of Arthritis and Musculoskeletal and Skin Diseases at niamsinfo@mail.nih.gov or (301) 496-8190.

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