The Core Registry collects common and condition specific datasets for a wide range of endocrine and bone conditions including those that are covered within Endo-ERN and ERN BOND. The data collected will be used to improve clinical care as well as research. The Core Registry will also advise participants on other suitable studies and registries.
Compared to the e-REC, where only first encounters are monitored, the Core Registry allows clinicians to monitor a patient for a longer period. Patient Reported Outcome Measures (PROMs) are also included in this platform and can be completed by clinicians and patients. It collects more detailed data and can therefore answer more detailed questions (e.g., “What are the baseline characteristics of the patients?” or “How are patients diagnosed?”).
For some conditions, the Core Registry can collect more data by the use of Condition Specific Modules. Patients can also access the Core Registry to view the information the healthcare professional added and to complete questionnaires.
As a clinician or researcher, you can register for the Core Registry here. If you are a patient who would like to contribute to the Core Registry, you can can contact the Registry Team at email@example.com. As a patient you can also Contribute in other ways.
You can find results from the Core Registry in our. This report has been developed to describe the activity of the Core Registry between June 2019 and December 2022.
You can download the Core Registry diagnosis and conditions dictionary and the Core Registry data dictionary here.