North American Clinical Care Consensus for Neonates and Infants (0-12 Months) with Prader-Willi Syndrome: Delphi Consensus Proposal
Funding Summary
Lay Abstract
The overall aim of this project is to develop clear, evidence-informed, multidisciplinary standards of care for North American neonates and infants aged 0–12 months with Prader-Willi syndrome (PWS). The project has three specific aims:
Specific Aim 1: To achieve expert multidisciplinary consensus on best practices for inpatient and early outpatient management of neonates and infants with PWS using a rigorously designed modified Delphi process.
Specific Aim 2: To define consensus-based safety standards and care pathways across key domains of early PWS care, including feeding and nutrition, respiratory and sleep monitoring, endocrine evaluation and treatment, neurodevelopmental support, and post-NICU transition planning.
Specific Aim 3: To incorporate structured caregiver perspectives through a North American Family Advisory Panel to refine consensus statements for clarity, feasibility, and caregiver burden, thereby enhancing real-world applicability and equity of implementation.
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