Project Summary

Background: Pediatric Feeding Disorder (PFD) is a complex condition that affects children and families and is often associated with intellectual and/or developmental delays. PFD research often fails to account for the lived experiences of patient and family stakeholders.

Proposed Solution to the Problem: To solve this, Feeding Matters will launch a project team to empower patient and family stakeholders to build capacity for PFD research by creating the virtual Feeding Matters Family-Centered PFD Research Consortium which will have a focus on patient-centered comparative clinical effectiveness research (CER). 

Objectives: The primary objective is to establish the Consortium (17-20 members) and integrate it into the larger Feeding Matters organizational structure within the Research Pillar.

Activities: The project team will employ effective partnership principles and meet regularly to establish the Consortium. They will recruit diverse members, establish shared values and collaboration commitments, provide training on research fundamentals and the state of PFD research, support the selection of Consortium leaders, facilitate consensus building on research priorities and eventually transition full execution and management to the Consortium members with administrative support from Feeding Matters.

Projected Outcomes and Outputs: 

Short-term outcomes during the project period: The project aims to establish the Consortium, train its members, support the development of governance and facilitate the creation of a priority list of patient-centered CER topics.

Medium-term outcomes (0-2 years post-project period): Efforts will be made to involve diverse stakeholders to expand consortium membership and further build PFD research capacity. The Consortium will partner with academic institutions to initiate research studies addressing the prioritized list the Consortium built during the project term.

Long-term outcomes (3+ years post-project period): Led by families in partnership with clinicians and researchers, the Consortium will be a leader in shaping PFD research and promoting family engagement.

Patient and Stakeholder Engagement Plan: By integrating patient and families' lived experiences from the beginning, the Consortium will have its own structure, decision-making power and patient-centered CER focus extending beyond the project term. The goals of capacity building and patient engagement align with the principles advocated by Feeding Matters, promoting meaningful involvement of patients and families in PFD research to shape its future and improve care.

Project Collaborators: Feeding Matters is ideal to lead this engagement project and facilitate development of the Consortium due to its strong commitment to stakeholder involvement. In addition to Feeding Matters, University of North Carolina Wilmington team members will serve as subcontractors and support the project through subject matter expertise on PFD, intellectual and developmental disability (IDD) and patient-centered CER. Other team members are stakeholder representatives for the various domains involved in PFD and IDD.

Project Information

Jaclyn Pederson
Feeding Matters
$241,862

Key Dates

December 2025
2023

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Project Status
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Last updated: April 3, 2024