Patient Reported Outcomes
In the latest release of the Core Registry (Jan 2021), the platform has the ability to include Patient Reported Tools such as EQ5D, PROMIS, WHO-DAS and provide language specificity. The new version of the registry also has more tools for personalising communication with patients.
Clinician Reported Outcomes
The new version also has the capacity for clinicians to develop condition-specific outcome modules. Currently there are modules for specific Thyroid and Calcium & PO conditions that are being piloted. If you are interested in developing a condition-specific outcome module please get in touch.
Pituitary Working Group The Pituitary specific module: work in progress. A group of experts has initiated the development of a dataset that will collect information specific to certain pituitary conditions. Aggressive pituitary adenoma and pituitary adenoma in childhood will be the first available submodules.
The EuRRECa/EuRR-Bone databases are moving!
In the first quarter of 2021, the Core Registry and e-REC databases will move from Glasgow to Leiden (LUMC). We anticipate that moving the databases (seamlessly) will ensure compliance with any EU governance and data sharing requirements.
Activity Report Headline data on the Core Registry are available here: https://eurreca.net/reports/
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