OBJECTIVES: Vitiligo is a chronic autoimmune disease characterized by skin depigmentation and significant clinical and psychosocial comorbidities. Recent understanding of vitiligo pathophysiology informed development of new treatments, highlighting the need for real-world evidence (RWE) generation to inform on patient burden, optimal treatment approaches, and health technology assessment decisions. As a naive search produced few results, we sought to identify and assess the suitability of RWE sources for addressing vitiligo-specific research questions.

METHODS: Data sources were identified and assessed from 6 European countries (Belgium, Germany, Spain, Italy, Netherlands, United Kingdom) using a 2-stage process. Sources were identified through a targeted literature review, web searches, and RWE experts. Direct engagement with shortlisted data source owners was used to evaluate captured data, including vitiligo clinical characteristics as well as operational parameters.

RESULTS: We identified 66 data sources for vitiligo research. Seventeen were shortlisted and 12 responded (Belgium, n=3; Germany, n=1; Spain, n=2; Italy, n=3; Netherlands, n=2; United Kingdom, n=1), including 6 electronic medical records (EMR), 3 EMR/clinical research forms, 2 EMR/claims, and 1 EMR/survey. Vitiligo clinical characteristics (Body Surface Area [BSA], skin type, and vitiligo location) were captured in 4 (33%), 6 (50%), and 6 (50%) sources, respectively. Assessed sources included primary (n=3, 25%), secondary (n=4, 33%), and primary/secondary care (n=5, 41%). Vitiligo-specific treatments captured were mostly prescriptions, including repigmentation therapy (n=9, 75%) and light therapy (n=8, 67%). Three (25%) sources captured both health-related quality of life (HRQoL) and patient reported outcomes (PROs), whereas only 1 (8%) systematically captured disease severity and HRQoL measures.

CONCLUSIONS: Europe’s current RWE sources have limited use for vitiligo evidence generation, and institutions rarely systematically capture vitiligo-specific measures. Coordinated collection of vitiligo-specific disease characteristics, HRQoL data, and harmonization of tools/scores used is needed to support evidence-based treatment and reimbursement decisions to improve patient outcomes.