Disability Community Engagement Partner Project-Pediatrics

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ABSTRACT The National Institutes of Health (NIH) is building one of the most comprehensive, observational research initiatives ever conducted in the United States through the All of Us Research Project (AoURP). Once limited to adult participants, AoURP is expanding to include pediatric participants. The objective of the Disability Community Engagement Partner Project-Pediatrics (DCEPPPEDS) is to engage and facilitate the participation of the pediatric disability population in the AoURP to ensure better health outcomes and individualized health care for this population. Three Specific Aims have been identified for the project including: 1) Establishing and activating a Pediatric Disability Consortium; 2) Implementing a facilitated enrollment pilot program with CSHCN Families; and 3) Developing and implementing a CSHCN/ Disability and Effective Communication and Enrollment Practices Training Curriculum for AoU Consortium members. Project activities will be guided by a Pediatric Disability Consortium formed from disability organizations, pediatric clinical providers, and families (e.g., parents, guardians, conservators of children with disabilities). A comprehensive DCEPP-PEDS Outreach and Engagement Communications Plan will be developed and implemented across each year of the project. Several implementation and development models inform the project’s design and methods, including the Community and Participant Engagement (CPE) Framework, the transtheoretical model of health behavior change (TTM), the Point-to-Middle-to-Target (P-M-T) Model, and the Analysis, Design, Development, Implementation, and Evaluation (ADDIE) Model, and Landscape and Environmental Scan principles. The solid foundation of implementation and development models, key personnel with pediatric disability experience, staff with the lived experience of disability, and organizational experience, including the adult-focused Disability Community Engagement Partner Project (DCEPP), should ensure the success of the project.