Key features

Project design


This registry is a multicenter, longitudinal study with prospective collection of data and biological material.

At least 10 sites worldwide will participate in the registry. We plan to enroll at least 150 patients in at least 10 countries. The duration of the registry is 5 years and will include 14 visits.


Each site will be asked to involve at least 20 patients.


Patients will be informed about the purpose of the registry at the dermatology departments of the participating sites and will be asked to give their informed consent to participate. For patients who have given informed consent, phenotypic description will be collected at baseline.


Phenotypic description


At baseline and at every following visit, the investigator will record a detailed phenotypic characterization of the patient’s clinical features. A case report form (Appendix 2) is going to be used, as well as a number of clinical scores (see below).