Advancing the Science of Pediatric Patient Reported Outcomes for Children with Chronic Diseases
News & Updates
The PEPR Consortium held its last meeting, The Science of Pediatric Patient-Reported Outcomes: Findings from the NIH PEPR Consortium, in December 2019.
Watch the full recording of the meeting here!
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. This work capitalizes on recent advances in the science of pediatric PROs.
The Consortium, formed in 2015, consists of four Centers of Excellence: The Children's Hospital of Philadelphia, Northwestern University, Medical College of Wisconsin and Duke University.
The PEPR Consortium aims to capture the voice and lived experiences of children and their families using PROMIS® measures and to leverage these experiences to improve research and clinical care, ultimately improving children’s health and well-being.
The Consortium’s work seeks to thoroughly evaluate the validity of PROMIS® in clinical populations by demonstrating how patients and their parents are viewing children’s quality of life and by examining how those experiences change over time. The Consortium's 15 longitudinal studies compare clinical indicators of disease severity to patient-reported outcomes in cohorts of children with 11 chronic conditions: asthma, atopic dermatitis, cancer (active treatment), cancer survivorship, chronic kidney disease, Crohn's disease, juvenile idiopathic arthritis, lupus, sickle cell disease, type 1 diabetes and ulcerative colitis.
To accelerate the adoption of PROMIS® in pediatric clinical research and practice, this evidence evaluating the content validity, clinical meaning of PRO scores, responsiveness and longitudinal construct validity of a common set of PROMIS® pediatric measures is needed.
These studies will contribute to an evidence base supporting implementation of PROMIS® measures in pediatric clinical practice and research and will develop a methodological approach that can be replicated in the future for other PROMIS® measures and chronic conditions.
Across 30 states, Washington D.C. and
2 Canadian Provinces
US States & Canadian Provinces with Collaborating Sites
Patient-Reported Outcomes Measurement Information System (PROMIS)®
For more information, visit the following links:
Intro to PROMIS®
Obtain & Administer Measures
Measure Development & Research
The PEPR Consortium's studies use PROMIS®, a set of person-centered measures designed to evaluate physical, mental and social health in children and adults, to understand children's experiences. Through funding from 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.
Get in touch for more information about our research, Pediatric PROs and collaborative opportunities.
Children's Hospital of Philadelphia
Roberts Center for Pediatric Research
Center for Applied Clinical Research/PEDSnet
2716 South Street – 11th Floor
Philadelphia, PA 19146-2305