Presentation (CTI)

OBJECTIVES: Vitiligo is a chronic skin depigmentation condition that can cause severe psychosocial morbidity. Existing routinely collected data lack the detailed information needed, on vitiligo phenotype, treatment provided and condition specific outcomes, to facilitate essential vitiligo research. To fill this gap, we created a high-fidelity vitiligo registry, integrating multiple data-sources, in an NHS vitiligo specialist care setting.
METHODS: The Vitiligo Registry and Bio-resource (VOICE) currently integrates five years of data collected directly from consented children and adult patients attending the UK's only specialist vitiligo service. Ethical and data governance approval were obtained, and data feeds from a specialist, purpose-built longitudinal clinic database and routinely collected secondary care records were combined to create the VOICE dataset.
RESULTS: Currently data is available for 585 patients (55% female, mean vitiligo onset age 27 years (inter quartile range [IQR] 12, 40). Mean follow-up time is 1.88 years (IQR 0.96, 2.82) with 64% of patients having 2+ years of follow-up. N=533 (91%) have detailed phenotype information, including Vitiligo Extent Score and Fitzpatrick skin type. The registry has complete capture of NHS specialist treatment, including phototherapy modality (PUVA, excimer lamp, narrowband UBV). This information was combined with multiple outcome measures, including laboratory measurements, serial Vitiligo Extent Score values and psychological measures, such as the Dermatology Life Quality Index (DLQI), Stigma Scale for Chronic Illnesses (SSCI-8) and Brief Illness Perception Questionnaire (BIPQ).
CONCLUSIONS: The VOICE is the largest high-fidelity vitiligo registry, created to date, which can facilitate world-leading clinical and health economics vitiligo research. It also provides a blueprint for developing similar high-fidelity specialist registries for other conditions.