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.
EJP RD and ERICA have developed a series a customisable template documents that can be used by the European Reference Networks (ERNs) to obtain the consent of the patients to get their data included in the registry (Informed Consent Form) and establish their governance structure (Data Access Policy). Additionally, legal contracts to be used when data is transferred from an HCP to a central registry (Data Sharing Agreement) or from a registry to an external stakeholder (Data Transfer Agreement) are also provided.
All templates are available under page Generated documents
Recommendations on registry data collection:
ERICA aims to promote collaborative inter- ERNs research projects. It is therefore crucial to have a centralised location to announce any new project and search for collaborators. We are happy to announce that a specific web page has been created for this purpose on the ERICA website (Research Wall). It provides basic information about the open calls for collaboration as well as contact details of the project PI. Please note that the current page only contains examples!
If you have any new inter- ERN project that you wish to advertise via this research wall, please contact ERICA Coordinating office (firstname.lastname@example.org). The new projects will be regularly announced in the ERICA newsletters and Twitter. Additionally, if you wish to receive updates directly by email, we kindly ask you to
REGISTER HERE in a mailing list that would alert you when a new project is posted.