The goal of ERASPEN (European Rare And Severe Psoriasis Expert Network) is to harmonize phenotypic descriptions of rare and severe forms of psoriasis in Europe, to collect clinical information and biological samples and to improve the level of clinical care and scientific investigation of these important and difficult conditions. The European Academy of Dermatology and Venereology generously supports our network.
To this end, we invited 29 European expert clinicians to meet and agree on a common agenda. We placed great emphasis on sufficient representation across Europe and postponed the meeting twice until September 2014 at the ESDR in Copenhagen, where we met with participants representing the UK, Switzerland, Germany, Denmark and Spain. The group’s consensus at the first ERASPEN meeting was that phenotypic criteria for pustular psoriasis and other pustular conditions must be harmonized across Europe to allow collaborative studies and organized collection of clinical data and biological samples. Sample collection procedures should be adapted as well for high quality of biological samples independent of the location of origin. In addition, the group decided to prepare and submit matching clinical study proposals in each participants’ national health service and decide on a common standard operating procedure for sample collection and shipping. A peer-reviewed version of an electronic case report form will be presented at the next ERASPEN meeting at in the board room of ESDR in Rotterdam Thursday 10th of September 0900-1100.