4 Centers of Excellence 6 Performance Sites 82 Collaborating Sites 23 PROMIS Measures 11 Conditons
The Pediatric Patient Reported Outcomes in Chronic Diseases (PEPR) Consortium, funded by the National Institutes of Health (NIH) and administered by the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS), is dedicated to the clinical evaluation of pediatric patient-reported outcomes (PROs) among children with chronic diseases.
NIAMS issued a Request for Applications (RFA) in March 2015 which resulted in a consortium consisting of four Centers of Excellence: The Children's Hospital of Philadelphia, Northwestern University, Medical College of Wisconsin and Duke University. This work capitalizes on recent advances in the science of pediatric PROs. The purpose of our research is to improve child and adolescent well-being by capturing the voice and lived experiences of children and their families using PROMIS measures.
Most of the PROs under evaluation in the PEPR Consortium come from PROMIS, a set of person-centered measures designed to evaluate physical, mental and social health in children and adults. Funded by the National Institutes of Health, the PROMIS measures were rigorously developed using advanced techniques in measurement science. They can be used with the general population and with individuals living with chronic conditions.
PROMIS pediatric measures were developed in socio-demographically and clinically diverse samples. Within the PROMIS suite of tools there are over 50 pediatric and parent-proxy instruments currently available.