Family-Centered PFD Research Consortium

Feeding Matters is launching a new family-centered program to inform research on pediatric feeding disorder (PFD) ensuring that as PFD research grows, we are always considering the family voice.

We have selected our consortium members! Meet them here.

The Feeding Matters Family-Centered PFD Research Consortium launch was partially funded through a Patient-Centered Outcomes Research Institute® (PCORI®) Eugene Washington PCORI Engagement Award (EACB-31710).

Challenge:
There is a lack of patient/family engagement in research. Therefore, while PFD research has increased in recent years, it often doesn’t reflect the needs and perspectives of those affected by PFD.

Solution:
Establish the Family-Centered PFD Research Consortium to serve as a meaningful collaboration between patient and family stakeholders, researchers, and clinicians in the field of PFD.

Empower and prepare families to actively partner in research, enabling them to contribute their unique perspectives to grow the PFD research field.

By placing patient and family stakeholders at the research table and equipping them with the necessary skills, knowledge, and resources, the Consortium will bridge the existing gaps in PFD research building capacity for future research.

Long-term Vision:
As a beacon of family inclusion, the Consortium will serve as a model for advancing PFD research, ensuring that families remain at the center of the research process, going beyond being mere subjects of the study. This family-led approach will contribute to the meaningful and sustainable advancement of knowledge, leading to improved outcomes and care for children and families affected by PFD.

Consortium Goal:
We aim to create a space where the voices of parents of children with PFD and adults with PFD themselves are central to the research process. By forming a consortium, we aim to build capacity for PFD research to ensure that it truly reflects the experiences of those living with PFD.

Latest Project Updates

September 26, 2024
Consortium members have completed Series One of their training and will continue on Series Two. They have also established the first version of their governance documents and have elected their leaders.

May 30, 2024
Consortium Members are establishing their governance structure and documents, and they have initiated the Year 1 training plan.

March 20, 2024
All consortium members have been selected and have accepted their invitation to join. They are currently undergoing the onboarding process and preparing for the first meeting.

January 17, 2024
Feeding Matters is currently recruiting patient and family leaders to launch our Family-Centered PFD Research Consortium.


The Patient-Centered Outcomes Research Institute® (PCORI®) is an independent, nonprofit organization authorized by federal law. Its mission is to fund research that will provide patients, their caregivers, and clinicians with the evidence-based information needed to make better-informed healthcare decisions. PCORI is committed to continually seeking input from a broad range of stakeholders to guide its work.