Skin experts at the University of Nottingham are calling for men and parents of children with the chronic skin condition ‘lichen sclerosus’ to help decide the future of research into this little-known disease.
Lichen sclerosus is a condition of unknown cause and is not contagious. It mainly affects the genital area. As such it can be seen as an embarrassing problem and therefore may be under-reported to health professionals. It can affect women, men and children on any part of the body but more commonly appears as white patches on the genitals causing discomfort and itching.
The estimated prevalence in adult females is up to 3% and 0.07% in males, although some believe that is just as common in men and boys as it is in females. There are many uncertainties about the causes, diagnosis and management of the condition due to lack of published high quality evidence.
In order to prioritise future research in this area, dermatologists at the University’s Centre of Evidence-Based Dermatology have launched a ‘Priority Setting Partnership’. This has been set up to identify research questions that are important to people with lichen sclerosus and health professionals involved in their care. The aim is to produce a list of the ‘Top 10’ unanswered questions to be addressed by future research.
The team is asking people with experience of lichen sclerosus, as a patient, parent, carer, partner, and health professionals involved in the care of people with lichen sclerosus, to complete a short survey and share their views. In particular, the researchers would like more entries from men and parents of children affected by the condition.
Project lead, Dr Rosalind Simpson, said: “This is a one off opportunity for people who have experience of lichen sclerosus to have their say in future research! It is really important that we encourage men, parents of children and relevant health professionals to enter the survey as we want these groups to be as equally represented as possible. Please take a look at our website for further information and enter the survey so that your voice can be heard– it will take less than 10 minutes of your time.”
The project is funded by the British Society for the Study of Vulval Disease and co‐ordinated through the Centre of Evidence Based Dermatology at the University of Nottingham.