Multi-centre, prospective, observational clinical registry of paediatric and adult patients with vitiligo on phototherapy, or novel topical/systemic immune-modulatory therapies.

Abstract

Vitiligo is the most common depigmentation disorder affecting around 1% of the population worldwide. Currently, no national or international registry for patients with vitiligo exists. Individual dermatologists maintain a descriptive database of such patients, which involves patients in one centre. In addition, such single centre registries do not aim to establish short- and long-term safety (pharmacovigilance) and effectiveness of vitiligo therapies. As an initial step for the development of a national UK registry for vitiligo patients, development of a pilot multi-centred registry in the UK is needed. This pilot study is being developed in collaboration with the British Association of Dermatologists (BAD). VIRTUAL-UK (VItiligo RegisTry for adUlts And children) assesses treatment effectiveness and safety as well as treatment impact on quality of life in children and adults with vitiligo, who receive phototherapy, novel topical and/or systemic immuno-modulatory therapies. Such a registry will ultimately inform treatment guidelines, provide pharmacogenetic and pharmacodynamic research data, help answer questions on skin cancer risk for vitiligo patients who receive prolonged phototherapy courses, especially regarding high cumulative exposures in children with less deeply pigmented skin, and help to identify those patients likely to experience rapid disease progression, ultimately improving and personalising patient care. With novel topical and oral immunomodulatory therapies having just entering vitiligo clinical practice, the timing is ideal to harness the high-quality data collection offered by the UK NHS.