By sharing data, you can directly contribute to improve the quality of life of patients with rare endocrine and bone/mineral conditions. Share, Care, Cure!
You can report cases in two different registries:
- e-REC, an e-reporting programme that captures new clinical encounters
- The Core Registry, that collects common and condition-specific datasets. Patients can also contribute to this registry.
No identifiable personal information is captured in e-REC and individual patient consent is not required. For the Core Registry you can only enter patient data after obtaining consent from the patient by using a Patient Consent Form.
You can also provide patient access to the Core Registry, so your patient can enter her/his own data.
If you would like to do more research on the data collected in the registries as a clinician, you can start or join a Study Group.
The information collected by the Core Registry is to be collected during routine clinical care and may be shared with approved users to perform or develop new research studies.
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. Please have a look at our Ethics Approval page.