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Co-Designing a Digital Pathway to Implement Pediatric Down Syndrome Health Supervision Guidelines

Award Number: R21HD118352
ORGANIZATION: NATIONAL INSTITUTE OF CHILD HEALTH AND HUMAN DEVELOPMENT
OPDIV: NIH
AWARD CLASS: DISCRETIONARY
AWARD ACTIVITY TYPE: SCIENTIFIC/HEALTH RESEARCH (INCLUDES SURVEYS)
PERIOD OF PERFORMANCE START DATE: 08/21/2026
PERIOD OF PERFORMANCE END DATE: 07/31/2028

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Co-Designing a Digital Pathway to Implement Pediatric Down Syndrome Health Supervision Guidelines - 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.


Issue Date FY	Funding FY	Legal Entity Name	Legal Entity Address	Legal Entity City	Legal Entity State	Legal Entity Zip Code	Legal Entity COUNTY	Legal Entity COUNTRY	Assistance Listing	Award Code	Budget Year	Action Date	Action Type	Action Amount

Issue Date FY: 2026 ( Subtotal = $448,860 )
2026	2026	ANN & ROBERT H LURIE CHILDRENS HOSPITAL OF CHICAGO	225 E CHICAGO AVE	CHICAGO	IL	60611	COOK	USA	Child Health and Human Development Extramural Research	000	1	8/21/2026	NEW	$448,860
														Subtotal = $448,860

Grand Total All Awards = $448,860

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Co-Designing a Digital Pathway to Implement Pediatric Down Syndrome Health Supervision Guidelines

Award Number: R21HD118352

ORGANIZATION: NATIONAL INSTITUTE OF CHILD HEALTH AND HUMAN DEVELOPMENT

OPDIV: NIH

AWARD CLASS: DISCRETIONARY

AWARD ACTIVITY TYPE: SCIENTIFIC/HEALTH RESEARCH (INCLUDES SURVEYS)

PERIOD OF PERFORMANCE START DATE: 08/21/2026

PERIOD OF PERFORMANCE END DATE: 07/31/2028

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