The aim is to have a central European registry for all cases of rare dermatological diseases, which will be a useful tool for clinical research, simplify the development of cohorts and answer the specific questions of each Disease Group.

Beginning of 2020 we’ve started working with our collaborator Morris Swertz and the IT team of UMCG (Hospital Groningen, Netherlands), who is in charge of designing and developing our global ERN-Skin registry, which will be hosted on the Molgenis platform.

This registry is using the JRC dataset (minimum dataset imposed by the European Commission) plus a few picture fields. Then extended datasets – depending on our specific needs – will be added to allow a better categorization and differentiation of cases. Pseudonymisation is applied, so the patient’s identity always remains unknown.

Interoperability will be used to avoid keying data again. As much as possible, existing registries will be “connected” automatically to the new ERN-Skin registry (technical and legal aspects to be analyzed). Once provided patient consent is in alignment and legal aspect validated, pseudonymised patient data will be pushed automatically in the global registry.

ERDRI : a Registry of Registries, provided by the European Commission, has been designed to receive MDS information sent from all registries of the 24 ERNs, via interoperable connections. It provides a pseudonymisation tool and enables to search for information using filters.

We have organized ourselves in different Work Groups in order to involve all ERN-Skin Disease groups (see slides) and build the Registry in close alignment with your needs.

– Registry Workgroup (Reg WG): Follow-up project, VOC (voice of customer).

This is the minimum core team taking care of this project on a regular basis, gathering information and discussing developments together. This team is composed of Morris Swertz’ team and ERN-Skin project Managers.

– Registry Workgroup / Expert Users: is in charge of value/test registry to check if it meets the needs of users: applicationwise and functionwise.

These experts come from Disease Groups, give input on the functionalities of the registry and they operate the testing all along the project process. They are thus meeting with the Reg WG each other week, and are available regularly to take actions.

Transversal Registry Group – Disease Group : this group is discussing the topics brought into light by the Registry WG, shares scientific knowledge, gives advice on requirements and takes strategic decisions. Meetings happen on a monthly basis.

Each Disease Group has nominated a Registry Representative who is responsible to attend the monthly meetings (or to be represented) and to share knowledge with his teams in order to help moving in the right direction.

The Registry Representative is having a central role within his/her Disease Group to share the information given during the call, to relay the questions that were raised and still need some clarity, and express Disease Groups’ needs, also to help the Reg WG in the understanding of medical specificities.

The Patient Representatives taking part in each Disease Group are welcome to interact with their Registry Representative.

– Transversal Registry Group – core group: present on monthly meetings, this group is discussing strategy, shares scientific knowledge and gives advice on requirements.

You are a practician, click here to access ERRAS Registry.