This project will focus on recruiting patient and family consortium members and leaders, training them on research fundamentals and the state of PFD research, establishing consortium governance, and then building consensus on a prioritized list of needed research for the field.

A team at Feeding Matters in partnership with University of North Carolina Wilmington has been approved for a $241,000 funding award through the Eugene Washington PCORI Engagement Awards (Engagement Awards) program, an initiative of the Patient-Centered Outcomes Research Institute (PCORI). The funds will support the launch of the Family Centered Pediatric Feeding Disorder (PFD) Research Consortium.

Jaclyn Pederson, MHI, CEO of Feeding Matters will co-lead the engagement project with Hayley Estrem, PhD, RN, Associate Professor at UNCW. Research on PFD is still considered an emerging field and while there has been great progress in recent years on the advancement of research, it still lacks the inclusion of the patient and family voice. PFD is impaired oral intake that is not age-appropriate and is associated with medical, nutritional, feeding skill, and/or psychosocial dysfunction. For these infants and children, every bite of food can be painful, scary, or impossible, potentially impeding nutrition, development, growth, and overall well-being. PFD is often a silent battle affecting more than 1 in 37 American children under the age of five annually. This prevalence surpasses that of well-known childhood conditions like cerebral palsy and autism.

This disorder places an extreme burden on parents/caregivers who must have specialized training in medical, therapeutic, and psychosocial interventions for every meal, often 5x a day or more. Despite this high level of involvement from families, they are often left behind in considering where the field of PFD is headed. Feeding Matters ensures that families always have a place at the table and aims to build a collaborative Research Consortium that will eventually be the field leader for the future of PFD research. To achieve this, Feeding Matters will launch the Family-Centered PFD Research Consortium to be co-created and led by patients and families themselves. Specifically, the project will focus on recruiting patient and family consortium members and leaders, training them on research fundamentals and the state of PFD research, establishing consortium governance, and then building consensus on a prioritized list of needed research for the field.

The launch of the Family-Centered PFD Research Consortium is part of a portfolio of projects that PCORI has funded to help develop a community of patients and other stakeholders equipped to participate as partners in comparative clinical effectiveness research (CER) and disseminate PCORI-funded study results. PCORI is an independent, nonprofit organization authorized by Congress with a mission to fund patient-centered comparative clinical effectiveness research that provides patients, their caregivers and clinicians with the evidence-based information they need to make better informed health and health care decisions. Through the Engagement Award Program, PCORI is creating an expansive network of individuals, communities and organizations interested in and able to participate in, share, and use patient-centered CER.

According to Greg Martin, PCORI’s Chief of Engagement, Dissemination and Implementation, “This project was selected for Engagement Award funding because it will build a community equipped to participate as partners in CER and develop partnerships and infrastructure to disseminate PCORI-funded research results. We look forward to working with Feeding Matters throughout the course of their two-year project.”

“The core values that guide our organization: inclusivity, innovation, and collaboration are not just ideals; they are the bedrock of every initiative we undertake as we strive to advance the field of PFD. Our latest endeavor, the PCORI project, epitomizes this commitment and resonates deeply with me professionally and personally,” said Jaclyn Pederson, CEO of Feeding Matters. “At Feeding Matters, we recognize that traditional research paradigms often overlook the invaluable insights that families can provide, based on their lived experiences. The establishment of the Family-Centered PFD Research Consortium is a pivotal step forward, ensuring that our efforts are not only collaborative but also deeply rooted in respect and input from the experiences of those we aim to serve,” Pederson concluded.

Feeding Matters’ project and the other projects approved for funding by the PCORI Engagement Award Program were selected through a highly competitive review process in which applications were assessed for their ability to meet PCORI’s engagement goals and objectives, as well as program criteria. For more information about PCORI’s funding to support engagement efforts, visit this link.

About Feeding Matters

For kids with pediatric feeding disorder (PFD), every bite of food can be painful, scary, or simply impossible to swallow, potentially impeding nutrition, development, growth, and overall well-being. Yet, there is no functional system of care for PFD locally, nationally, or internationally. That’s why Feeding Matters is dedicated to creating a world where children with pediatric feeding disorder will thrive. Established in 2006, Feeding Matters is the first organization in the world uniting the concerns of families with the field’s leading advocates, experts, and allied healthcare professionals to ignite unprecedented change to the system of care through advocacy, education, support, and research – including a stand-alone diagnosis, the International Pediatric Feeding Disorder Conference, and the Infant and Child Feeding Questionnaire. In 2022, Feeding Matters reached over 240,000 individuals in 50 states and 153 countries through their programs and website. To learn more about pediatric feeding disorder, visit feedingmatters.org or follow us on Facebook, Instagram and YouTube at @FeedingMatters.

Learn more about the Family-Centered PFD Research Consortium here.