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 2022
The 4th EuRRECa annual meeting will take place on-line on 14th February 2022 (the day before the 6th Endo-ERN General assembly). The webinar programme is available on the website and participants can register here. All welcome.
EuRRECa Project Transition
The EuRRECa project runs officially until 31st March 2022 bringing the project into line with Endo-ERN and EuRR-Bone. This will coincide with the anticipated move of the Core Registry and e-REC databases from Glasgow to Leiden in the first quarter of 2022. After this, the project will continue to operate from Leiden.
Endo-ERN - Amsterdam
Congratulations to Alberto Pereira, Coordinator of Endo-ERN for taking up a new position in Amsterdam. EuRRECa will continue its close relationship with EuRR-Bone and Endo-ERN between Glasgow, Leiden and Amsterdam.
New Websites For e-REC and Core Registry
On transfer of the databases from Glasgow to Leiden, the link to the login page for e-REC and the Core Registry will change. The new urls will become:
A redirect will be placed on the existing pages to guide users to the new locations.
Core Registry & e-REC Drop-in sessions
EuRRECa runs a series of drop in sessions for patients, parents, professionals or researchers who are interested to find out more about e-REC or the Core Registry. These sessions are scheduled on the second Friday in every month at 2pm (CET) and the fourth Wednesday in every month at 4pm (CET). You don't need to register; just drop in. Ad hoc sessions at other times can also be arranged upon request.
Recurring Zoom link for all sessions: (Passcode 755169)
The annual meeting of the European Society of Endocrinology will be held on 21-24 May 2022 in Milan and the European Society for Paediatric Endocrinology will be held on 15-17 Sept 2022. EuRRECa and EuRR-Bone will be present with a joint exhibition booth where informational materials, presentations and interactive demos will be available. Several abstracts are planned for both events showcasing the increasing activity in both projects. Abstract Submission deadline for eECE is 31st January 2022.
Inaugural lecture - Professor of Endocrine Registries, LUMC
The inaugural lecture by Faisal Ahmed has been rescheduled and will now take place at Universiteit Leiden on 4th July 2022. If you are interested in attending, please let us know at email@example.com.
Collection of COVID-19 infections in patients with rare endocrine or bone conditions ceased on 31st December 2021. Secondary surveys for reported cases in all condition groups (MTGs) will remain open until 31st March 2022. For more information visit the COVID-19 section of the website
Signposting health care providers and patients to high quality detailed disease registries is one of the central aims of the EuRRECa project. Workpackage 3, led by Luca Persani, has launched a process for creating a list of affiliate registries. Registries seeking affiliate status should complete an application form which is available on the website.
Core Registry Developments
Dashboard for Clinicians
Find a summary of the records added by you and your colleagues in your centre upon login to the Core Registry. This dashboard also includes information on your patients' preferences.
Patient Reported Outcomes
Patient Reported Outcome Measures (PROMs) are available to be completed by the patient and the clinician. Measures such as EQ-5D have been added in several languages. The Brief Pain Inventory Short Form will be available soon.
Which other PROMs should be added to the registries? EuRRECa and EuRR-Bone have launched a survey for patients and health care providers to help answer this question. Participate before February 21st.
Activity Report Further details of the activity of the Core Registry are available at eurreca.net/reports/
The EuRRECa project encourages all stakeholders to approach the Data Access Committee for obtaining data for research and audit. The data access policy has been revised to include EuRR-Bone and the membership of the committee now includes patients with relevant conditions as well as representatives from ECTS and ERN-BOND. For details please visit the Data Access Committee website
A new on-line 'smart' data request application form has been developed. To apply for access to e-REC or Core Registry data, please see the website for details
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