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Lichen Sclerosus PSP

Lichen Sclerosus Priority Setting Partnership (PSP)
 

Overview

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.

Get involved

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.

 

Key Facts

1. What does the PSP involve?

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.

  • Survey 1 Collection survey - asking for uncertainties in the management of lichen sclerosus from patients, their parents/carers/partners, and health professionals.
  • Uncertainties collated Responses to survey used to identify true uncertainties.
  • Survey 2 Ranking survey – most frequently raised questions about uncertainties to be ranked in order of importance 
  • Final workshop This involves people who have lichen sclerosus, their parents/carers/partners, and health professionals attending a workshop to discuss and prioritise the submitted questions.
  • Top 10 uncertainties Information is published and developed in to research proposals so that future research focuses on the most important questions.
 
2. Who is involved?
 
3. How can I take part?

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.

 
4. What will happen to the results of the study? 

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.

 

Further information

For further information about the process of Priority Setting Partnerships please see the James Lind Alliance website.

ProtocolSteering Group biographiesPoster
 

Partner Organisations

 

BAD
BSSVD logo
JLA
UKDCTN
 
 
pcds-logo
sapc-logo
Vpslogo
 

MSVN_Logo
BSPD
 

 

ISSVD_logo

 BASHH_Logo

 

  DermNetNZ

 

Centre of Evidence Based Dermatology

The University of Nottingham
King's Meadow Campus
Lenton Lane
Nottingham, NG7 2NR


telephone: +44 (0) 115 823 1048
email:cebd@nottingham.ac.uk