Presentations

PEPR Consortium Face-to-Face Meeting 2019

The Science of Pediatric Patient-Reported Outcomes: Findings from the NIH PEPR Consortium

Do we have the right outcome measures for children compared to adults?...It's really an important part of the FDA's mission to make sure that clinical trial endpoints capture the voice of patients and caregivers and what they really care about.

-Janet Woodcock, MD

      Director of the Center for Drug Evaluation and Research at the FDA  

Topics & Presentations:

To view presentations by topic, click the links to each center

• Using PROMIS to assess change over time in children with chronic kidney disease, Sandra Amaral ​

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• Use of PROMIS for survivors of childhood cancer, I-Chan Huang

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• Incorporation of PROMIS measures in a pragmatic trial of pediatric Crohn's disease, Michael Kappelman

• Expanding construct validity of established and new PROMIS Pediatric measures for children and adolescents receiving cancer treatment, Bryce Reeve

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• PROMIS measures in relation to disease activity and social media sharing among youth with rheumatic diseases, Elissa Weitzman

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• Experience with PROMIS measures in an internet-based cohort of children with inflammatory bowel disease, Michael Kappelman

• The impact of childhood chronic disease on child patient reported outcomes, Julie Panepinto, Ashima Singh, Michael Levas

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• Family relationships among children with chronic disease, Kathryn Flynn

• Stigma perceived by children with chronic conditions, Jin-Shei Lai

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• PIQ-C (PROMIS Itch Questionnaire - Child) in pediatric atopic dermatitis, Amy Paller

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• Asthma impact and AAD-PEPR,     

       Raj Kumar

• Assessing how children can feel and function using objective physical activity data and PROMIS Pediatric measures,  Courtney Mann

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• Geomarkers and chronic disease: Mapping the PROMIS measures, Marissa Hauptman

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• Guidance for use of pediatric PROMIS in ambulatory clinics, Harald Kliems, Thuy Dan Tran

• Group discussion on the future directions and opportunities for pediatric patient-reported outcomes science

• Read a summary of next steps for advancing the science of patient-reported outcomes assessment in children and adolescents here.