The Core Registry collects a core data set for a wide range of rare bone and mineral conditions. The data collected 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. As the Core Registry has been functional within EuRRECa since 2019 it has been approved by the National Ethics Service and Information Governance authorities in the UK. This is the reason EuRR-Bone could embark the Core registry quickly and the registry is open for rare bone and mineral conditions.
Graphic Walkthrough of the Core Registry
The Core Registry does not collect any information on names, addresses and local hospital numbers. Patients can also access their own information in the Core Registry. All information is kept strictly confidential and handled through secure password protected electronic systems and only those who are directly involved with the Registry are able to obtain access.
Clinicians can enter patient data into the Core Registry after obtaining consent from the patient. 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.