Establishing an International Interdisciplinary Research Network in Craniofacial Microsomia: The CARE Program

Area of Science:

• Medical research
• Psychosocial health
• Healthcare delivery

Background:

• Craniofacial Microsomia (CFM) is a congenital condition causing underdevelopment of facial structures.
• Limited understanding exists regarding the psychological well-being and healthcare experiences of individuals with CFM and their caregivers.

Purpose of the Study:

• To address knowledge gaps in psychological health and healthcare experiences for individuals with CFM.
• To identify opportunities for psychosocial interventions and enhanced healthcare provision.
• To establish a comprehensive research program for the CFM community.

Main Methods:

• Conducting narrative interviews with individuals with CFM and caregivers.
• Administering an international online survey to identify predictors of psychological distress.
• Performing semi-structured interviews with healthcare providers and advocacy leaders.
• Establishing a participant registry for a longitudinal database and community development.

Main Results:

• Established research teams in the USA and UK with an international Advisory Committee.
• Ongoing data analysis for initial aims, informing subsequent research phases.
• Development of a dedicated website for recruitment, education, and community engagement.

Conclusions:

• The CARE program offers a comprehensive strategy to understand CFM patient and caregiver experiences.
• Sharing challenges and lessons learned benefits the broader CFM community.
• The program aims to improve psychosocial support and healthcare for individuals with CFM.