The Person and Family-Centered Feeding Research Consortium enters its next chapter

From the very beginning, Feeding Matters was built by and for families navigating the challenges of pediatric feeding disorder (PFD) and avoidant/restrictive food intake disorder (ARFID). We know that meaningful change happens when those with lived experience are not just heard, but leading the way.

That’s why in 2023, with support from the Patient-Centered Outcomes Research Institute® (PCORI®) Eugene Washington PCORI Engagement Award, we launched the Family-Centered PFD Research Consortium—a first-of-its-kind effort to make sure feeding research reflects the realities of families’ lives.

Over the past two years, this group of 20 parents, caregivers, and individuals with lived experience have:

• Completed extensive training to understand the current landscape of PFD and ARFID research
• Identified over 120 research questions drawn directly from lived experience
• Synthesized those into seven research priorities and three research themes representing the greatest needs and gaps in the field
• Partnered with researchers and clinicians to refine and publish these priorities

The Consortium recently submitted their first paper for peer review—marking a major milestone in ensuring that future feeding research centers the people most affected by it. They also look forward to presenting these at the upcoming International PFD Conference.

As the PCORI-funded project concludes, the Consortium’s work is only gaining momentum. Moving forward, they will be known as the Person and Family-Centered Feeding Research Consortium, reflecting their growing membership and long-term vision.

Soon, researchers and the community at-large will be able to connect directly with the Consortium through an online submission portal to explore engaging them in your work and other collaborative opportunities.

💬 “Our goal is to bridge the gap between research and reality,” said one Consortium member. To hear directly from Consortium members and leaders, tune into the Feeding Does Matter Podcast, featuring a special episode about their journey and impact:

🎧 Episode 46: From Consortium to Podcast: Feeding Does Matter One Year Anniversary

Stay tuned for the Consortium’s upcoming publication, conference session, webpage, and communications updates—where their full list of priorities and ways to get involved will be shared.