In July 2013, we gratefully received an award of the project grant from EADV’s PPRC.
EADV recently funded the European Rare and Severe Psoriasis Expert Network (ERASPEN) that is a consortium of currently 23 expert clinicians seeking to collaborate and jointly investigate these conditions. ERASPEN aims to harmonize the phenotypic descriptions and diagnostic criteria, collect clinical information including treatment response data of these patients, as well as biological samples. We are currently in the process of finalizing the phenotypic criteria. Subsequently, data collection will start using online electronic case report forms, a secure database and a virtual biobank. On our website, templates for patient information and consent forms, study protocol for local ethics review, SOPs for biological samples and more are available for clinicians interested in joining us. Recently, rare damaging genetic variants in the IL36RN and AP1S3 genes were shown to underlie a part of pustular psoriasis cases. ERASPEN will be a platform to enable all collaborators to jointly perform such studies with greater statistical power and detailed clinical data. For the public, statistics of the clinical features of the patient cohort and treatment responses will be shown as well as educational material on these conditions to increase awareness.