The European Registries For Rare Endocrine Conditions project is supported by EU, ESE, ESPE & Endo-ERN to serve the needs of the wider endocrine and rare disease community. The project also works very closely with ERN-BOND and its associated registry EuRR-Bone.
EuRRECa in Brief
Specific aims of EuRRECa include:
e-reporting of rare conditions through e-REC
Collecting a core dataset for a wide range of endocrine and bone conditions
Identification of core outcomes that can be collected as part of routine practice
Promotion of high-quality detailed disease registries
EuRRECa Annual Meeting
The EuRRECa 3rd annual meeting will take place online on Monday 12th April 2021 (the day before the Endo-ERN GA). The meeting of the Project Governing board and Independent Advisory Board will also take place on the 12th April 2021. The Programme will be available on the EuRRECa website
EuRRECa at ESPE and ECE
The annual meetings of the European Society of Endocrinology and European Society for Paediatric Endocrinology will be held on-line in 2021. EuRRECa and EuRR-Bone will be present with a joint virtual booth where informational materials, newsletters and posters will be available for all participants.
The European Reference Network on Rare Endocrine Conditions together with the journal 'Endocrine' will release a special supplemental issue on rare endocrine conditions, which shall be released on Rare Disease Day 28 February 2021.
Core Registry Developments
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.
Since April 2020, the e-REC platform is also being used for reporting COVID-19 infection in a patient with an existing endocrine or metabolic bone condition. For more information visit the COVID-19 section of the website
Suspected vs Confirmed cases
Users of e-REC can now update a previously reported suspected case if the diagnosis is confirmed or excluded.
With over 6000 new encounters reported in e-REC, the data in this registry are a valuable resource for understanding some core features through secondary surveys. For further information visit the secondary surveys website.
The EuRRECa team are delighted to welcome Ana Priego-Zurita, a pre-doctoral research fellow based in Leiden. Ana is a paediatric endocrinologist and will be working jointly on the EuRRECa and EuRR-Bone projects.
Core Registry & e-REC Drop-in sessions
A series of sessions have been arranged to demonstrate the e-REC and the Core Registry and find out about recent developments. These sessions are scheduled on every second Friday of the month at 2pm (CET). You don't need to register; just drop in. Ad hoc sessions at other times can also be arranged upon request. Please feel free to join any of these sessions.
The EuRRECa project encourages all stakeholders to approach the Data Access Committee for obtaining data for research and audit. Further information is also available in a recent paper on the EuRRECa project as a model for data access and governance policies for rare disease registries that collect clinical outcomes in Int J Environ Res Public Health 2020
This newsletter is part of the project ‘777215 / EuRRECa’ which has received funding from the EU’s Health Programme (2014-2020). The content represents the views of the authors and is their sole responsibility; it can not be considered to reflect the views of the EC and/or CHAFEA or any other body of the EU. The EC and the Agency do not accept any responsibility for use that may be made of the information it contains.
EuRRECa Project Support Team
Office for Rare Conditions, Royal Hospital for Children