ERN-Skin EXCOM Meeting – 23 April 2018
The ERN-Skin Executive Committee (EXCOM) met on 23rd April 2018 in Hôpital Necker Enfants Malades, Paris, France. The EXCOM is composed of the chairs of the thematic and transversal groups and of 2 patient representatives elected by the Skin e-PAG. Additionally, 2 Eurordis members joined the meeting.
The aim of the meeting was to focus on the ERN-Skin’s added value. Participants discussed Year 1 results and activities compared with their initial objectives, the achievements and their use including dissemination but also looked at the major problems and the lessons learned, and made some recommendations for the next steps.
Skin e-PAG presented the clinical outcomes from a patient’s perspective and the participants discussed the further development of the skin burden score. The persons in charge of the organisation of the ERN-Skin panels led a discussion on technical and legal issues related to CPMS and proposed a panel calendar for the 8 thematic groups. The co-coordinator in charge of registries presented the outcome of the training workshop on the European Rare Disease Registry Infrastructure and led the discussion on the issues raised by using this solution for the ERN-Skin. The co-coordinator for training presented an overview of the 2018 training (23 November, Ospedale Pediatrico Bambino Gesù, Rome, Italy). The chair of the Deep Phenotyping Group reported on the SPOT App progress. The chair of the Cutaneous Mosaic Disorder group presented the outcomes of the cooperation with VASCERN on guidelines, and proposed topics for collaboration such as ERN-Skin “Pills of Knowledge”. General discussion followed on the cooperation with scientific societies such as the European Academy of Dermatology and Venereology.
For each topic, the participants agreed on a strategy to move forward with concrete goals and deadlines.