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. Learn more about the program and how you can get involved!
Feeding Matters held an informational webinar on February 15, 2024. You can view a recording of the webinar here. After watching the webinar, if you are interested in joining the consortium, please fill out this form by Thursday, February 22, 2024.
Review the Family-Centered PFD Research Consortium FAQs for more information.
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).
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.
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.
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.
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.
Family Member Commitment:
Participants who are considered family members must be a parent/caregiver to a child with PFD or have/had PFD themselves. Family members will be asked to attend monthly virtual meetings and an in-person gathering in February 2025. Participants commitment will not go unnoticed – families will be reimbursed for their time.
Learn more information in the Consortium FAQs here.
- Influence the direction of PFD research
- Connect with a supportive community
- Make a tangible difference for families affected by PFD
Interested in participating?
Join us on Thursday, February 15th 430pm EST for an informational webinar geared at sharing more about the consortium and to answer any questions you might have. Can’t attend at that time? Still sign up as we will be recording it and will send out the link after the session takes place!
Latest Project Updates
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.