Defining patient-centered research priorities in pediatric dermatology

Area of Science:

• Pediatric Dermatology
• Patient-Centered Research
• Dermatologic Diseases

Background:

• Patient and caregiver perspectives are crucial for understanding pediatric dermatologic diseases.
• The Pediatric Dermatology Research Alliance (PeDRA) Patient Advisory Committee (PtAC) was formed to address this need.
• PtAC comprises patient representatives and parents of children with cutaneous conditions.

Purpose of the Study:

• To identify comprehensive, high-priority research needs in pediatric dermatology.
• To build consensus on research priorities through an iterative process.
• To ensure patient-centric initiatives in dermatologic research.

Main Methods:

• A research prioritization survey was developed based on prior discussions.
• The survey was completed by PtAC members representing diverse dermatologic conditions.
• Subsequent meetings and collaborations refined emerging priorities.

Main Results:

• Sixty research needs were identified across five key domains.
• Domains include psychosocial challenges, health care navigation, disease management, life-saving treatments, and quality-of-life treatments.
• Participating conditions included alopecia areata, atopic dermatitis, and others.

Conclusions:

• Pediatric dermatology research priorities show alignment across patient communities.
• These shared priorities can guide meaningful, patient-focused research initiatives.
• The findings emphasize the importance of integrating patient voices into research agendas.