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 . 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 green 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 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.
Patients can contact their clinicians to see the data that have been entered in the Registry. Patients can access their own data and online select their own preferences. For online access, patients will need to provide their email address to their clinician. This is captured on the consent form.
For further queries or to make any suggestions for improvement please contact email@example.com.
There are three options for obtaining consent to enter clinical data into the Core Registry.
Option 1 – Use the EuRRECa Information Sheets & Opt-In Consent Forms that have been developed for the EuRRECa Core Registry.
Option 2 – Use the ERN Information Sheets & Opt-In Consent Forms that have been developed for general use for all ERNs. However, this will allow limited registry functionality
Option 3 – Use Opt-Out Consent that has been developed locally. However, this will allow limited registry functionality.