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research-project
Research project

Juvenile Lichen Sclerosus

Status: Ongoing

Lichen sclerosus of the vulva (VLS) is a chronic skin condition affecting women of all ages. Major symptoms are pain, pruritus and permanent loss of the architecture of the labia.

What we do

About our project

Background information 

There is no scientific literature on the long term effects of VLS diagnosed in childhood. Therefore we cannot validly counsel these girls, their parents and physicians on questions such as the expected course of the disease, sexuality, pregnancy and delivery, nor about the possible risk of vulvar cancer.

Overall aim 

The aim of this project is to identify and question girls and women who had developed VLS in childhood or adolescence about the sequelae of the disease, and to continue to follow them  with the aim to gain insight into the long term consequences of the disease. This will support clinicians and patients with regard to diagnosis, counseling and treatment. Our research team closely collaborates with the patient special interest group of the Netherlands, the Stichting Lichen Sclerosus.

Research method 

A national historic cohort has been identified including about 300 girls, aged 2-18 years at the time of diagnosis (if the diagnosis was made by skin biopsy) with a mean 14 years (range 2-27 years) elapsed since diagnosis. The project will be performed as follows:

  • Revision of the tissue diagnosis on all available samples.
  • Tracing these subjects (many of whom are now adults) and analyzing any current complaints that may be related to VLS. This will be done by questionnaires and interviews.
  • This cohort will be the start of a national retro- and prospective database including girls and adolescents diagnosed with VLS, irrespective whether the diagnosis is made clinically or histologically, who will be followed into adulthood.

Desirable outcome

The information from the questionnaires and interviews will give insight into whether and, if so, how juvenile VLS affects the adult women, and what possible health risks there may be for these girls in adulthood. This project is a unique opportunity for the Netherlands, something that worldwide has not yet been done.