Building Capacity for Patient Centered Outcomes Research in Pediatric Dermatology

Background: Childhood skin diseases are prevalent and take a devastating toll on the physical, social, and psychological well-being of children and their families. Despite this impact, treatment options are limited and research progress has been slow. The Pediatric Dermatology Research Alliance (PeDRA) was formed to overcome these obstacles and is now at the forefront of the field.

Proposed Solution to the Problem: It is necessary to ensure that the patient perspective remains at the center of PeDRA’s activities as it drives the field of pediatric dermatology research forward. Therefore, PeDRA will establish the capacity for sustained, meaningful engagement with patients with childhood skin diseases and their families. 

Objectives:

• Create an educated cohort of stakeholders from the patient and researcher communities and provide them with resources to ask and answer high-priority research questions in pediatric dermatology.
• Establish infrastructure for sustained engagement between stakeholders from the patient and researcher communities in pediatric dermatology. The far-reaching impact of the project is an improvement in the ability of patients, families, and healthcare providers to make informed healthcare decisions from a list of meaningful and effective options to manage disease.

Activities: PeDRA will overhaul its existing website to include a hub for patient engagement in research and bidirectional education between patients and researchers. It will go on to facilitate in-person engagement between patients and researchers at the PeDRA Annual Conference and at meetings of patient advocacy organizations. Finally, it will establish a standing patient advisory committee (PeDRA-PAC) to provide patient stakeholders with a perpetual seat at the table of pediatric dermatology research.

Outcomes/Outputs (projected):

• Increased capacity for pediatric dermatology researchers to conduct patient-centered research.
• An educated and empowered community of patient stakeholders engaged with pediatric dermatology research.
• An infrastructure for sustained patient engagement.
• The execution of large-scale studies that address multiple childhood skin diseases.

Patient and Stakeholder Engagement Plan: Patients will be engaged with the help of 10 supporting patient advocacy organizations, with the hope that additional groups will collaborate with PeDRA to reach their patient audiences over the course of the project. PeDRA’s members will also be mobilized to engage patients and families through their clinics and professional networks.

Project Collaborators: PeDRA has the support of 10 patient advocacy organizations (National Eczema Association, Global Parents for Eczema Research, National Alopecia Areata Foundation, Nevus Outreach, Sturge-Weber Foundation, PHACE Syndrome Community, Foundation for Ichthyosis and Related Skin Types, EB Research Partnership, Epidermolysis Bullosa Medical Research Foundation, Pachyonychia Congenita Project, and the creative agency Hales Creative (Provo, Utah) on this project.