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Top 10 Lichen Sclerosus research priorities

A collaboration between researchers and lichen sclerosis patients and others impacted by the condition has produced a list of 10 priority research targets.

Known as the Lichen Sclerosus Priority Setting Partnership, the collaboration was led by Dr. Rosalind Simpson, a NIHR doctoral research fellow in the Centre of Evidence Based Dermatology, Faculty of Medicine & Health Sciences at the University of Nottingham, U.K. and a consulting dermatologist in Nottingham.

“Despite the fact that lichen sclerosus can make life miserable for at least one per cent of women and probably a similar proportion of men, this is an under-funded and under- researched medical problem,” said Dr. Simpson in a press release. “There is considerable need for further understanding of this condition as well as for improved knowledge and awareness amongst the public and the wider medical community.”

Approximately 650 patients, carers, relatives or health professionals submitted more than 2,500 questions to the initial survey and additional questions were gathered from three key systematic reviews and existing guidelines in the scientific literature. Out of these, 38 unique questions were identified that had not already been answered by research.

A second online survey, completed by 954 people, then identified a shortlist of 23 most important questions. These were then discussed by a range of patients and health professionals at a face-to-face workshop at which these final ‘top 10’ Research Priorities were established:

1. What is the best way to prevent and manage anatomical changes caused by lichen sclerosus?

2. What is the best way to diagnose lichen sclerosus (diagnostic criteria)?

3. What surgical treatments should be offered for lichen sclerosus?

4. Are there effective topical treatments other than topical steroids in the treatment of lichen sclerosus?

5. What is the risk of developing cancer in patients with lichen sclerosus?

6. Which aspects of lichen sclerosus should be measured to assess response to treatment?

7. Can lichen sclerosus be prevented from occurring and what are the trigger factors?

8. Is it necessary to continue treatment for patients with lichen sclerosus who do not have any symptoms and/or signs of disease activity?

9. What is the impact on quality of life?

10. Does the disease course of lichen sclerosus differ in boys and girls, adult males and females?

The project was conducted in collaboration with the James Lind Alliance and The British Society for the Study of Vulval Disease, which also funded the work. This report is now available online and has been published in the British Journal of Dermatology.

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