December 7, 2022 – The Pediatric Dermatology Research Alliance Patient Advisory Committee (PeDRA-PtAC), a group of fifteen patient representatives and parents of children with cutaneous disease, recently published an article in Pediatric Dermatology titled “Defining patient-centered research priorities in pediatric dermatology.”
After pursuing a multistep, iterative, consensus-building process, the PtAC’s unique mix of patient stakeholders assembled a list of sixty high-priority research questions and initiatives to focus future research projects and initiatives in the field. Rising to the forefront were issues related to psychosocial burden and health care systems, with additional priorities in the domains of disease causes and triggers, treatment to prolong life, and treatment to manage symptoms. Making this list unique, the questions and priorities reflect the shared needs and burdens of all fourteen diseases and conditions represented by the PtAC at the time of publication, and all questions and priorities are specific to childhood disease.
Dr. Holly Neale, a past PeDRA Fellow and collaborator with the PtAC, was the first author on this publication. This project was partially funded through a Patient-Centered Outcomes Research Institute® (PCORI®) Eugene Washington PCORI Engagement Award (16347-PeDRA).
Learn more about these and other papers published by PeDRA and the investigators it’s funded on the PeDRA Publication Page.