The EuRRECa Core Registry collects a very small amount of information in a registry for a wide range of rare conditions including those that are covered within Endo‐ERN and ERN-BOND. The data collected in the Registry will be used to improve clinical care as well as research. Access to the data will be governed by a Data Access Committee and the results of any studies performed will be disseminated widely. The registry will also advise participants on other suitable studies and registries. The Core Registry has been operational since June 2019. Click the link below to request access to the registry to begin adding your patients.
Clinicians can enter patient data into the Core Registry after obtaining consent from the patient. Reference centres within Endo-ERN and ERN-BOND may consider using the consent form provided by the ERN. However, more detailed information sheets and consent forms that have ethics and information governance approval have been created by EuRRECa and are available in several languages below. Those centres that recruit through a process of opt-out consent can specify this when a new record is created. Irrespective of the nature of the consent process, participating centres and clinicians are advised to seek local information governance and ethics approval.