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 Project Extension
The EuRRECa project has received a no cost extension until 31st March 2022 bringing the project into line with Endo-ERN and EuRR-Bone. This will coincide with the move of the Core Registry and e-REC databases from Glasgow to Leiden in the second half of 2021.
EuRRECa Annual Meeting 2021
The EuRRECa annual meeting took place on-line on 12th April 2021. Presentations were given on all the main activities of the project such as e-REC, Core registry patient and clinician reported outcomes and COVID-19 related activity. All presentations are available on the website. The next meeting will be held on 14th February 2022 in Milan the day before the 5th Endo-ERN General assembly.
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. Anybody who is interested in finding out more and this includes patients, parents, professionals or researchers are free to attend. 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.
EuRRECa has submitted its views on the recent EC consultation on the European Health Data Space (EHDS). EHDS aims at utilising digital health to provide high-quality healthcare, reduce inequalities and promote access to health data for research and innovation. Read more about the consultation in this joint press release by Endo-ERN, ESE, ESPE and EuRRECa.
The annual meeting of the European Society of Endocrinology was held on-line in May 2021 and the aannual meeting of the European Society for Paediatric Endocrinology will also be held on-line in Sept 2021. EuRRECa and EuRR-Bone will be present with a joint virtual booth where informational materials and presentations will be available for all participants. Three abstracts related to EuRRECa shall be presented at ESPE.
Inaugural lecture - Professor of Endocrine Registries, LUMC
Faisal Ahmed will deliver his inaugural lecture at Universiteit Leiden on 3rd December 2021. There is a plan to hold a symposium on the same day at LUMC. If you are interested in attending, please let us know at email@example.com.
Since April 2020, the e-REC platform has also been used for reporting COVID-19 infection in a patient with an existing endocrine or metabolic bone condition. In this joint initiative with ESE and Endo-ERN, secondary surveys on COVID-19 and rare endocrine and bone conditions have been launched for several conditions. 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 8000 new encounters reported in e-REC, the data in this registry are a valuable resource for understanding some core features through secondary surveys. Surveys are now available for a wide range of conditions. For further information visit the secondary surveys website.
In the latest release of the Core Registry (June 2021), the platform has the ability to include tools that collect PROs and can provide language specificity. EQ5D-Y is now available in several languages. The new version of the registry also has more tools for personalising communication with patients.
New Modules In The Core Registry
The new version also has the capacity for clinicians to develop condition-specific outcome modules and if you are interested in developing a condition-specific outcome module please get in touch with Jiilian Bryce (Jillian.firstname.lastname@example.org).
A Thyroid module has been active for a few months and to find out more please contact Edward Visser at email@example.com
A new module has just been developed for PHP/iPPSD and we would like to invite EuRRECa users to use this. To find out more please contact Alex Ertl at firstname.lastname@example.org
Pituitary Working Group A new group of experts has initiated the development of a module for pituitary conditions. Aggressive pituitary adenoma and pituitary adenoma in childhood will be the first available datasets. To find out more, please contact A.L.Priego_Zurita@lumc.nl
Other Modules In Development
EuRR-Bone is planning to develop outcome modules on Rare Hypophosphataemia, Osteogenesis Imperfecta, Achondroplasia and FD/MAS. To find out more, please contact email@example.com
Activity Report Further details of the activity of the Core Registry are available at eurreca.net/reports/
Revisions To The Condition Lists
Within the Bone Condition group the list of conditions that users can report on has been expanded. To enable reporting on these conditions please revise your e-REC Reporting set-up.
The Pituitary condition group has now been changed to Hypothalamic and Pituitary in the Core Registry and e-REC and the conditions list has been extended to include hypothalamic conditions.
Please let us know if any rare endocrine condition or diagnosis is missing in the Core Registry.
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
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