# NIH grant: Co-Designing a Digital Pathway to Implement Pediatric Down Syndrome Health Supervision Guidelines (1R21HD118352-01A1) — retained record

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NIH grant 1R21HD118352-01A1: Co-Designing a Digital Pathway to Implement Pediatric Down Syndrome Health Supervision Guidelines
Institute: {'code': 'HD', 'abbreviation': 'NICHD', 'name': 'Eunice Kennedy Shriver National Institute of Child Health and Human Development', 'admin_org_id': '12500030', 'admin_funding_url': ''}. PI: Carolyn C. Foster. Award: $448860.
Start: 2026-08-21T00:00:00.
PROJECT SUMMARY/ABSTRACT
 Children with Down syndrome (DS) – a genetic condition caused by extra of all or part of the 21st chromosome
– are at increased risk for numerous co-occurring conditions and have additional behavioral and disability-related
needs. Well-established, evidence-based health supervision guidelines based on robust prior research make
recommendations for comorbidity screening, facilitation of early treatment, and behavioral counseling to improve
chance of cure, reduce symptom burden and/or improve quality of life for children with DS. However, primary
care clinician adherence to DS guidance is low and not always patient- and family-centered. A critical
need exists to help clinicians to not just “adhere” to DS guidelines but to “co-produce” healthcare that is effective
and efficient. In this 2-year multiphase developmental R21, we will bring together adolescents with DS, family
caregivers, clinicians, and organizational leaders to design a “digital care pathway” to improve clinician
adherence to pediatric Down syndrome guidelines in a manner that is scalable across different primary care
settings (academic, community-practice, Federally Qualified Health Clinic) and relevant to different electronic
health record (EHR) types. By using a Learning Health System approach, we will also create a longitudinal
structure to capture clinical data of children with DS for future research.
 In Aim 1, we will use pre-implementation focus groups to identify the determinants and strategies relevant
to implementing DS care guidance in primary care and digital requirements that are EHR platform agnostic.
Facilitation guides, informed by Consolidated Framework for Implementation Research (CFIR) as well as its
accompanying Expert Recommendations for Implementing Change (ERIC) tool [CFIR-ERIC tool], will be
developed for each constituent group to elicit guidance on pertinent determinants and inform selection of ideal
implementation strategies to digitally deliver DS guidance in primary care. Then, in Aim 2, we will co-design a
digital “care pathway” to facilitate clinician and family completion of DS guidance. Using serial in-person design
workshops, we will jointly engage family caregivers and clinicians to iteratively specify, build, and refine the digital
strategies for implementing DS guidance within a “care pathway” using the Epic Systems© electronic health
record, and then iteratively test and refine the pathway’s usability among additional clinicians and family
caregivers with a range of health and technology literacy.
 Altogether, this work will catalyze a paradigm shift in DS primary care, by addressing the real-life issues
clinicians face to conducting primary care for children with DS in a scalable manner. Our results will lead directly
to a clinical trial to test implementation of the digital care pathway, which will also generate a new
longitudinal data source for future study relevant to the Investigation of Co-occurring conditions across the
Lifespan to Understand Down syndrome (INCLUDE) Project.
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