Vitiligo Priority Setting Partnership
Overview
Vitiligo is the most frequent depigmentation disorder of the skin and is cosmetically and psychologically devastating. A Cochrane systematic review has shown that the research evidence for treatment of vitiligo is poor, making it difficult to make firm recommendations for clinical practice.
To address this, the James Lind Alliance Vitiligo Priority Setting Partnership (PSP) was set up as part of a project co‐ordinated by the Centre for Evidence Based Dermatology to identify and prioritise research questions that are important to people with vitiligo (their carers/parents) and clinicians.
Key Facts
1. What did the exercise involve?
The Partnership began its process in April 2009 and held its final priority setting workshop in March 2010.
Vitiligo treatment uncertainties were gathered from patients, healthcare professionals and researchers with an interest in vitiligo. These were then prioritized in a transparent process, using a methodology advocated by the James Lind Alliance.
2. What were the results?
In total, 660 treatment uncertainties were submitted by 461 participants. These were reduced to a list of the 23 most popular topics through an online/paper voting process.
The 23 were then prioritized at a face-to-face workshop in London in March 2010 where the final list of the top 10 treatment uncertainties were drawn up.
The list included interventions such as systemic immunosuppressants, topical treatments, light therapy, melanocyte-stimulating hormone analogues, gene therapy, and the impact of psychological interventions on the quality of life of patients with vitiligo.
3. What do the results signify?
The
top 10 research areas for the treatment of vitiligo provide guidance for researchers and funding bodies, to ensure that future research answers questions that are important both to clinicians and to patients.
4. What next?
The results are being shared with funding and research agenda setting organisations to implement research. Researchers will be encouraged to focus on these unanswered questions in the years to come.
Studies are currently been developed by the Centre of Evidence Based Dermatology in line with the findings of the Partnership.
Outcomes
Publication
Clinical Trial
Links
Partner Organisations
The Vitiligo Society, British Association of Dermatologists, University of Nottingham (and related skin disease networks such as Cochrane Skin Group), Changing Faces, James Lind Alliance, and NHS Evidence ‐ UK DUETs, (Database of Uncertainty about the Effects of Treatments).