Data Collection, Integration and Sharing

Data Collection, Integration and
Sharing (WP2)

WP2 will focus on the possibilities for harmonised data capture, protection and access across ERNs keeping patient-centred outcome measures in mind for which strategic guidance will be provided in Patient-Centred Research WP3.

In WP2, the members of the Registries Expert Working Group (EWG) within the ERN Coordinators’ Research Workgroup will launch several coordinated activities to advance the development and integration of ERN-wide rare disease registries and their utilization for joint research initiatives. In addition, support for the creation of biorepositories within and across ERNs will be provided and the use of the EJP RD virtual platform for rare disease research will be promoted.