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EuRRECa (European Registries for Rare Endocrine Conditions) which is funded by the European Union’s Health Programme is aimed at maximising the opportunity for all patients, health care professionals and researchers to participate and use high-quality, patient-centred registries for rare endocrine conditions covered within the European Reference Network on Rare Endocrine Conditions (Endo-ERN).

The project, launched in February 2018, will achieve its aim by running an e-reporting programme (e-REC), developing a new core endocrine registry that collects a core dataset that also includes objective markers of clinical outcome and, lastly, by signposting participants to high-quality, detailed, disease-specific and patient-centred registries that have been evaluated by EuRRECa.

The project builds on the structure that has been created by Endo-ERN but will also be open to all health care professionals beyond this ERN. EuRRECa receives guidance from Expert Advisory Groups that align with the Main Thematic Groups of Endo-ERN and their guidance will flow through work packages that will review the needs of patients, and parents, comply with the highest ethical standards, evaluate the quality and interoperability of datasets and combine them with patient-centred clinical outcomes. Clear policies that are acceptable to patients, researchers and industry for accessing data for research coupled with widespread dissemination and knowledge exchange through closely affiliated professional endocrine societies, patient support groups and across all the ERNs will ensure that EuRRECa is sustained beyond the current lifetime of the project.

 

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This website is part of the project ‘777215 / EuRRECa’ which has received funding from the European Union’s Health Programme (2014-2020). The content of this website represents the views of the author only and is his/her sole responsibility; it can not be considered to reflect the views of the European Commission and/or the Consumers, Health, Agriculture and Food Executive Agency or any other body of the European Union. The European Commission and the Agency do not accept any responsibility for use that may be made of the information it contains.