Lichen sclerosus is a chronic, inflammatory skin condition that mainly affects genital skin.
There are many uncertainties about lichen sclerosus in men, women and children, due to lack of published high quality evidence. There is a great need for further research into the diagnosis, treatment and prevention of this condition.
To address this, the James Lind Alliance Lichen Sclerosus Priority Setting Partnership (PSP) has been set up to identify and prioritise research questions that are important to people who have lichen sclerosus, the people who care for them, and the health professionals who treat them. The project is funded by the British Society for the Study of Vulval Disease (BSSVD) and co‐ordinated through the Centre of Evidence Based Dermatology.
We are asking people with experience of lichen sclerosus, as a patient, parent, carer, partner or health professional, to complete our surveys.
The first survey is now closed.
The second survey will open early 2018. Contact us if you would like to be notified when the survey opens.
The partnership held its first meeting in July 2017. Surveys will be used to help identify questions that are important to people who have lichen sclerosus, the people who care for them, and the health professionals who treat them. The questions may be about the causes, diagnosis, treatment or prevention of lichen sclerosus.
A summary of the whole process is shown below. It will take about one year to complete.
The partner organisations involved in promoting the Lichen Sclerosus PSP are as follows:
British Society for the Study of Vulval Disease (BSSVD)
UK Dermatology Clinical Trials Network (UK DCTN)
British Association of Dermatologists (BAD)
James Lind Alliance (JLA)
DermNet New Zealand
Primary Care Dermatology Society
Society for Academic Primary Care (SAPC)
Vulval Pain Society
Manchester Vulval Support Network (MVSN)
International Society for the Study of Vulvovaginal Disease (ISSVD)
You can participate by answering our online surveys.
The initial survey (now closed) asked you to submit which questions about the diagnosis, treatment and prevention of lichen sclerosus are most important.
A second survey will ask you to vote for which questions generated by the first survey are the most important to you.
The uncertainties identified during this project will be published on the JLA website and used to inform future research funding. The results will be made available on this website as well as through partner organisations’ websites and social media. We will also publish the results in the scientific press. You will not be identified in any publication. We will also make funding bodies aware of the Top 10 questions to help raise the profile of lichen sclerosus research.
For further information about the process of Priority Setting Partnerships please see the James Lind Alliance website.
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