The Core Registry will collect a small amount of information in a registry for a wide range of rare conditions including those that are covered within ERN BOND and Endo-ERN .
At this moment the EuRR-Bone Core Registry is functional as a beta version for Bone Disorders, for Mineral Disorders it is functional.
The data collected in the Registry will be used to improve clinical care as well as research and oversight to data access is provided by the Data Access Committee. The Core Registry will also advise participants on other suitable studies and registries. Click the link below to request access to the registry.
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 their ERN. Centres that recruit through a process of opt-out consent can specify this when a new record is created. However, more detailed information sheets and consent forms that have ethics and information governance approval have been created for use by any centre. These information sheets and consent forms allow greater patient involvement through functions such as dynamic consent, completion of patient reported outcomes and opting to stay in touch through newsletters. Irrespective of the nature of the consent process, participating centres and clinicians should seek local information governance and ethics approval.