The EuRRECa Core Endocrine Registry will collect a very small amount of information in a registry for a wide range of rare endocrine 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. It is anticipated that the first phase of the Core Endocrine Registry will become operational in June 2019.
In the first phase, clinicians can enter patient data into the Core Endocrine 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. Participating centres and clinicians are advised to seek local data protection and ethics approval.
Patients can contact their clinicians to see the data that have been entered in the Registry. In the next phase, it is anticipated that patients will be able to access their own data and online select their own preferences. For online access, patients will need to provide their email address to their clinician.
For further queries or to make any suggestions for improvement please contact firstname.lastname@example.org.
EuRRECa Information Sheets & Consent Forms For Core Endocrine Registry