First international survey on the experience of people living with vitiligo and their caregivers
The VPV study is coming soon. It marks an important moment for the global vitiligo community. Promoted by VIPOC (Vitiligo International Patient Organizations Committee), this research involving human persons (RIPH 3, Jardé Law) invites people living with vitiligo and their caregivers to share their experience through a secure online questionnaire.
The study questionnaire collects pseudonymized data only — no directly identifying information (name, address, email, phone, or photo) is collected. Each participant is assigned a random identifier. Participation requires reading the information note and expressing informed non-opposition, in accordance with the favorable opinion of the Committee for the Protection of Persons (CPP Île-de-France VII, 26 March 2026, ref. 2026-A00308-43).
The survey will collect real insights about the diagnostic journey, access to care and treatments, therapeutic preferences, psychosocial impacts, and quality of life (using the validated VitiQoL instrument). These data will help strengthen research, advocacy, and future care for people living with vitiligo.
What Is the Vitiligo Patient Views Study?
The VPV study is an observational, descriptive, cross-sectional, international study conducted via a self-administered online questionnaire (~44 questions, 20–30 minutes). It gathers information directly from people living with vitiligo and their caregivers.
Primary objective: describe the lived experience of people living with vitiligo and their caregivers through a standardized international survey covering disease awareness and knowledge, diagnostic journey, access to care and treatments, therapeutic decision-making preferences, information needs, and psychosocial, educational, professional and economic impacts.
Results will be published in peer-reviewed international journals (JAAD, BJD, JEADV) and synthesized in an accessible white paper.
Who Can Participate?
Three groups are eligible:
- Adults (≥ 18 years) living with vitiligo (self-reported or professionally diagnosed)
- Adolescents aged 12–17 living with vitiligo, with parental authorization and their own assent (age-appropriate information note provided)
- Legal guardians (parents or tutors) of minors under 18 with vitiligo
Eligibility requirements: ability to read the questionnaire language, acceptance of electronic informed consent after reading the information note, and internet access. Approximately 1,200 participants are expected worldwide.
Regulatory Framework
This study is classified as RIPH 3 (non-interventional research) under the Jardé Law. It received a favorable opinion from the CPP Île-de-France VII on 26 March 2026. It complies with GDPR and CNIL Reference Methodology MR-003.
Principal Investigator: Jean-Marie MEURANT (President, VIPOC). Scientific Committee: Prof. Khaled EZZEDINE (AP-HP Henri Mondor, France), Prof. Viktoria ELEFTHERIADOU (NHS, UK).
Data Protection
Data is pseudonymized and hosted on HDS-certified servers, encrypted (TLS 1.3), accessible only to authorized researchers. Retention: 15 years. Results are disseminated only in aggregate form. Participants have rights of access, rectification, erasure, and objection (DPO: dpo@vipoc.org).
Risks and Protective Measures
No physical risk. Some questions address sensitive topics (emotional impact, stigmatization, suicidal ideation). Protective measures include: ‘Prefer not to answer’ option, immediate support messages when needed, and country-specific helpline resources. Contact in case of distress: vpv.meurant@vipoc.org.
Funding and Independence
This research is supported by institutional and industrial partners (Pfizer, AbbVie, Almirall, Incyte, Novartis, ACM, TEVA) with contractual independence guarantees: no access to individual data, no involvement in analysis, no veto on publications.
From Survey to Global White Paper
Results will feed peer-reviewed scientific publications (STROBE guidelines) and a global white paper published by VIPOC with recommendations for patients, healthcare professionals, and policymakers. Presentations planned at AAD, EADV congresses and on World Vitiligo Day (June 25).
Why Participation Matters
Every response strengthens the study. More participants create stronger and more representative data. Your participation will contribute to a better understanding of the patient experience, more effective advocacy, and improved care.
The VPV study will open soon. People living with vitiligo and their caregivers are invited to take part. Your voice can help shape the future of vitiligo research and care.
Together, the vitiligo community can create meaningful change.
VPV Subscribe
Subscribe below to be notified when the VPV study opens for participation. This is not the study questionnaire itself — you will receive the link and full information note when the study launches.
VPV Subscribe
