defined!
By Dr Viktoria Eleftheriadou and Mrs Maxine Whitton
Vitiligo project is part of an independent research programme commissioned by the
National Institute for Health Research (NIHR) looking at setting priorities and
reducing uncertainties for the prevention and treatment of skin disease (SPRUSD).
This project is being coordinated at the centre of Evidence Based Dermatology,
University of Nottingham.
We are really pleased that vitiligo has been included in this research programme and
are working to ensure that future research focuses on questions that are important to
patients and clinicians.
In order to do so, we have been working closely with colleagues from the James Lind
Alliance (JLA). The James Lind Alliance aims to identify the most important gaps in
knowledge about the effects of treatments and has been established to bring
patients and clinicians together in a priority setting partnership.
Initially, a survey was conducted to collect uncertainties about the treatment of
vitiligo from patients and healthcare professionals. In total, 461 people submitted
1427 uncertainties, 660 of them were treatment related. Our research team also
indented 58 treatment uncertainties from the updated Cochrane systematic review
“Interventions for vitiligo” and the British Association of Dermatologists guidelines for
diagnosis and management of vitiligo. After a thorough refining process, 93 unique
treatment uncertainties were identified. Next, a ranking exercise was conducted,
which allowed people to vote for their favourite topics. This process identified the
Top 23 treatment uncertainties important to both patients and healthcare
professionals. Finally, the Final Prioritisation Workshop resulted in a list of Top 10
research priorities for the treatment of vitiligo. This workshop was a full day event at
the British Associations of Dermatologists House in London, on the 25th of March
2010.
I am really delighted at this stage to inform you that we have had an excellent turn
out and 40 people attended the workshop, almost half of them were patients and half
healthcare professionals, including Dermatologists, Specialists nurses, General
Practitioners, researchers, camouflage professionals . The summary of the
evaluation forms showed that 100% of the people who completed the forms were
very satisfied/satisfied with the Top 10 treatment uncertainties. Also, we have
received only positive comments such as “Excellent, well organised”, “Format
allowed for varied expertise and sharing of views and opinions”, “Excellent exchange
of views”,” People were listened to”, “A very successful day”. In addition, the James
Lind Alliance announced that the vitiligo working partnership was the most
successful partnership they have coordinated so far and the evidence from the
process garnered along the way is invaluable.
With regard to the dissemination of the Top 10 treatment uncertainties, our research
group is currently working on a series of articles and presentations for professional
organisations. This is important if the purpose of the project is to be realised i.e.
stimulating good quality trials of treatments for vitiligo. Unfortunately, for that reason
we would not be able to reveal the Top10 at this stage because of restrictions
applied to all research results which prohibits wide dissemination prior to publication
in a professional journal.
However, we would like to reassure you that the Top 10 treatment uncertainties for
vitiligo will be published in a future issue of Dispatches as well as being made
available on our website www.vitiligostudy.org.uk.
Finally, we would like to say a big thank you to all the people who contributed to this
process. We have received great support from the Vitiligo Society through the entire
project and the contribution of patients has been crucial to its success.
We really appreciate your time and willingness to be part of this unique and
important opportunity to have your say in research into vitiligo.
The views expressed in this article are those of the author and not necessarily
those of the NHS, NIHR or the Department of Health.
CONTACT INFORMATION
Please don’t hesitate to contact us
(Dr Viktoria Eleftheriadou) if you have any
enquires or suggestions on the
: vitiligostudy@nottinham.ac.uk
or
Viktoria.eleftheriadou@nottingham.ac.uk
or
by telephone: 0115 84 68633.
Useful websites:
Vitiligo Society
www.vitiligosociety.org.uk
Vitiligo Study
www.vitiligostudy.org.uk
James Lind Alliance:
www.lindalliance.org
UK Dermatology Clinical Trials
Network:
www.ukdctn.org
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