In late 2004, a group of scientists from several US-based academic institutions and the National Institutes of Health (NIH) formed a cooperative group funded under the NIH Roadmap for Medical Research Initiative (http://www.nihroadmap.nih.gov) to revolutionize the assessment of patient-reported outcomes for use in clinical research and healthcare delivery settings. This initiative - the Patient-Reported Outcomes Measurement Information System (PROMISTM) - establishes a national resource for precise and efficient measurement of patient-reported symptoms, functioning, and health-related quality of life, appropriate for patients with a wide variety of chronic diseases and conditions. The main goal of the PROMIS initiative is to develop and evaluate, for the clinical research community, a set of publicly available, efficient and flexible measurements of PROs, including health-related quality of life (HRQL). In 2009, the PROMIS initiative was extended with the award of new PROMIS research sites. The PROMIS network of clinicians, clinical researchers, and measurement experts includes the American Institutes for Research, Boston University, Children’s Hospital Medical Center (Cincinnati), Children’s Hospital of Philadelphia, Duke University, Georgetown University, Kessler Foundation, Northwestern University, Stanford University, Stony Brook University, University of California Las Angeles, University of Maryland, University of North Carolina, University of Pittsburgh, and University of Washington.
PROMIS instruments including computerized adaptive tests and short forms are available for adult and pediatric populations. Measures of physical function, fatigue, pain, sleep disturbance, emotional distress, social health, and global health are currently available.
For more information about PROMIS, please visit the website at www.nihpromis.org.