Localized scleroderma (LoS) is a rare and very heterogeneous, sclerotic disease of the skin, mainly involving the cutaneous and subcutaneous tissue. Not only adults but often also children are affected with a large variability of skin hardening. Depending on its subset, LoS has not only an impact on the human physical appearance, but also on mobility, physical growth (especially in children), and thereby deteriorates the quality of life.
The European Network for Localized Scleroderma, was founded in 2012 on a grant of the EADV and comprises mainly dermatologists from more than 30 European medical centres. We designed a disease-specific questionnaire with the consent of all network members, including information on gender, date of birth, height, weight, family history, extend of cutaneous and extracutaneous manifestations. Beside that we collect laboratory data and information about previous and current topical and/or systemic therapies.
The activities of the network, are managed by a central office located at Cologne University Hospital, Department of Dermatology and Venereology, and are in close exchange with all other centres on a regular basis through newsletters and meetings.
The analysis of the continually growing body of data will form the basis for the development of standardized recommendations for subset classification, diagnostic procedures and treatment strategies and will build up a well-defined patient cohort for future clinical studies.
Prof. P. Moinzadeh
Prof. T. Krieg