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PEPR Consortium

Advancing the Science of Pediatric Patient Reported Outcomes for Children with Chronic Diseases

about pepr

The Pediatric Patient Reported Outcomes in Chronic Diseases (PEPR) Consortium, is dedicated to the clinical evaluation of pediatric patient-reported outcomes (PROs) among children with chronic diseases. PEPR is funded by the National Institutes of Health (NIH) and administered by the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS).

The Consortium was formed in 2015 and consists of four Centers of Excellence: The Children's Hospital of PhiladelphiaNorthwestern UniversityMedical 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. 

OUR goal

The PEPR Consortium's goal is to improve child and adolescent well-being by capturing the voice and lived experiences of children and their families using PROMIS® measures.

Patient-Reported Outcomes Measurement Information System (PROMIS)®

For more information, visit the following links:

Intro to PROMIS®

Obtain & Administer Measures

Measure Development & Research

Most of the PROs 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.

PEPR STRUCTURE

 

Read more about PEPR Consortium's structure, our four Centers of Excellence and leaders at each site.

STUDIES

 

Learn about our 15 studies evaluating PROMIS measures across cohorts of children with 11 different chronic conditions.

 

PUBLICATIONS

 

Read our peer reviewed publications presenting results from PEPR studies.

 

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

PROMIS@email.chop.edu