Registry of vitiligo patients aims to break the stigma

Vitiligo is a common, acquired, discolouration of the skin. While vitiligo is hardly a disease with a high medical burden, there is a social stigma attached to it because of cosmetic reasons. To raise awareness, in this case in the Russian society, a platform for vitiligo patients has been created to monitor the disease and offer expert advice.

Vitiligo is a condition that causes loss of skin colour in patches caused by the lack of melanin. “It is both a medical and a social problem that remains unsolved as there is no effective treatment,” explained Dr Valentina Petunina (Pirogov Russian National Research Medical University, Russia) [1]. Vitiligo is considered an autoimmune disease, which raises questions about the role of vitiligo as a predictor of other autoimmune diseases. The disease progression of vitiligo is thought to mainly depend on climatic conditions and environmental factors.

Currently, there is no organisation for patients with vitiligo in Russia. Data on vitiligo patients is limited in general, as patients often do not seek help. To understand how vitiligo influences patients’ lives, Russian scientists have developed an online registry where patient information is gathered. This includes laboratory parameters as well as the identification of risk factors. Patients are asked to fill out a medical questionnaire focusing on environmental variables, ethnicity, history of vitiligo and autoimmune pathology in family members, trigger factors of exacerbation, and onset of the disease. Data on the efficacy of vitiligo therapy and quality of life is also collected. To date, the medical information of 64 patients has been available for the project. To further upgrade this new platform, a professional society was created that not only collects more epidemiological data but is also aimed at improving the quality of medical care for patients. For example, patients and physicians can ask questions and request advice from experts on the platform.

In short, a Russian registry has been developed for vitiligo patients to collect data on the disease progression and to provide a platform for advice.

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   1. Petunina V, et al. Russian registry of patient’s management with vitiligo. Abstract 198, ICD 2021, 10–13 November.

 

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Posted on 2 December, 202128 March, 2024