A short-term online survey is set to begin on May 30, 2021. It involves individual patients and support groups, academic institutions, and small-to-medium sized clinics.
Study title: Online Survey of Quality of Life of Patients with Vitiligo
Brief description: This online survey posted on Google Forms is designed to compare Quality of Life measure of patients with vitiligo in different countries within the same timeframe that could potentially relate to region-specific burden of the disease.
Background: Vitiligo affects all ages, sexes and social groups and approximately 1–2% of the world population. It is typically characterized by smooth white patches in the midst of normally pigmented skin, which gradually expand over time. Besides skin manifestation and frequent comorbidities, symptoms such as depression, anxiety, sleep disorders and suicidal thoughts are very common in people affected by this disease. Although primarily viewed as a benign skin condition, vitiligo has severe socioeconomic effects, which have a substantial impact on many aspects of physical, emotional, and mental well-being.
Study type: Observational
👉🏻 Start date: May 30, 2021
Estimated completion date: June 30, 2021
Estimated enrollment: over 10,000 participants
Ages eligible for study: 16+ (Adult, Senior)
Sexes eligible for study: All
Sampling method: Non-probability sample
Study population: Individuals self-reporting vitiligo
Outcome measures: Dermatology Life Quality Index
Inclusion criteria: Ability to complete a 10-question survey
Exclusion criteria: Inability to complete a 10-question survey
Locations: Online, healthcare institutions and participating vitiligo support groups locations in 100 countries
Sponsor: Vitiligo Research Foundation (VRF)
Principal investigator: Yan Valle, CEO VRF
Contacts: email firstname.lastname@example.org or write to 1, Penn Pl. #6205, New York NY 10119 USA
Guidelines on use: VR Foundation will provide guidance on how to distribute to and collect the questionnaire from the target, so that partners and practitioners alike apply it judiciously and responsibly for a given purpose.
Validated survey forms for select countries (👉🏻 other country-specific forms are available upon request):
🇨🇮 Ivory Coast (Côte d’Ivoire)
🇳🇿 New Zealand
🇵🇸 Palestinian Territories: English
🇵🇷 Puerto Rico
🇸🇦 Saudi Arabia
🇿🇦 South Africa
🇰🇷 South Korea
🇱🇰 Sri Lanka
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Our work is entirely funded by private donations – we receive no money from government. Your money will help us continue funding research into vitiligo and supporting people affected by the condition.
Though it is not always easy to treat vitiligo, there is much to be gained by clearly understanding the diagnosis, the future implications, treatment options and their outcomes.
Many people deal with vitiligo while remaining in the public eye, maintaining a positive outlook, and having a successful career.Copyright (C) Bodolóczki Júlia
By taking a little time to fill in the anonymous questionnaire, you can help researchers better understand and fight vitiligo.