Many priorities emerged from the 3 workshops (USA-UK, Europe, Africa online):
- Awareness, training of GP doctors, strengthen collaboration between vitiligo international organizations, access to clinical trials results or surveys in which the associations took part, maximize testimonies about the impact of the disease on quality of life to enrich research data, more studies on psychological burden, more concerns about children and youth (bullying, isolation..), more advocacy towards health authorities.
- These topics will be on the table of the new board to build the strategy for the next years.
- In the afternoon, a very interesting presentation “Patient engagement at the European Medicines Agency” of the EMA (European Medicine Agency) by Maria Marvis – Patients and Consumers Liaison: many questions about marketing authorization for drugs and generics, national or European level for agreement, relation FDA-EMA, conflict of interest and transparency, importance of the patients within EMA, price of the drugs, etc.…
VITAL Project (Vitiligo International Task Force for an Agreed List of core date)
Pr Nanja Van Geel explained online the “Vital Project” aimed to standardize the assessment and monitoring of vitiligo patients in clinical trials, registries, and clinical practice
This special day was led online, by Pr Nanja Van Geel. Nearly 20 leading vitiligo specialists from around the world presented –online or face-to-face- their recent works or studies on the different existing treatments: surgery, phototherapy, systemic treatment, oral and topical therapies, dietary supplements, vitamins….with a special session on the new ones coming up (Jaks, Ruxolitinib).
All participants, if volunteers to be members of the patient’s focus group, were invited to fill up the first questionnaire (what to measure, how, when, have more data about accepting or not a new drug, social impact …). More live/virtual meetings or electronics procedures (emails, surveys) will follow. The overall length of this study will be approximately 5 years A working group led by Dr. Viktoria Eleftheriaou, linked to the VITAL project, was dedicated to the impact of the treatment, and its burden on the quality of life.