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
• Capturing disease specific outcomes that are part of routine clinical care
• Promotion of high-quality detailed disease registries

2023

On Monday April 3rd the first joint EuRRECa / EuRR-Bone symposium will take place at the Academy building in Leiden, the Netherlands. The symposium precedes the inaugural lecture of prof. Faisal Ahmed at Leiden University.

You can download the complete programme of the symposium here.

Please confirm your attendance and register your interest.

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 of every month at 2pm (CET) and the fourth Wednesday of 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:  https://us02web.zoom.us/j/86149844975

In addition, some e-REC demonstration videos are available.

Core Registry

The Core Registry allows patient and health care professionals participation. It collects a core data set for a wide range of rare endocrine and rare bone and mineral conditions.

New Developments

• The Brief Pain Inventory – Short Form (BPI-SF) is now available on the patient and the clinician platform.
• New navigation buttons – to make it more user friendly and easier to guide you through the registry
• Outstanding tasks (Edit To Do button) – a tool to allow a reporter to make notes

Condition Specific Modules - Active

Thyroid - To find out more please contact Edward Visser at w.e.visser@erasmusmc.nl

PHP/iPPSD - To find out more please contact Alex Ertl at diana-alexandra.ertl@meduniwien.ac.at

Pituitary Tumour - To find out more please contact Ana Priego at A.L.Priego_Zurita@lumc.nl

Achondroplasia - To find out more please contact Klaus Mohnike at Klaus.Mohnike@med.ovgu.de or  EuRR_bone@lumc.nl

FD/MAS - To find out more please contact Natasha Appelman-Dijkstra at n.m.appelman-dijkstra@lumc.nl or EuRR_bone@lumc.nl

Osteogenesis Imperfecta - To find out more please contact Wolfgang Högler at Wolfgang.Hoegler@kepleruniklinikum.at or EuRR_bone@lumc.nl

Parathyroid Carcinoma - To find out more please contact Mariya Cherenko at m.cherenko@lumc.nl

Rare Obesity module - To find out more please contact Erica van den Akker at e.l.t.vandenakker@erasmusmc.nl

Rare Hypophosphataemia - To find out more please contact EuRR_bone@lumc.nl

If you would like to develop a condition specific module, please contact Ana Priego Zurita at A.L.Priego_Zurita@lumc.nl

EuRRECa and EuRR-Bone at Scientific Meetings

The 14th International Conference on Osteogenesis Imperfecta was held between 30 August and 2 September 2022 in Sheffield, UK. The registries exhibition booth received many visits of experts interested in the project. Find the abstracts here.

The annual meeting of the American Society for Bone and Mineral Research was held on 9-12 September 2022 in Austin, Texas, U.S.A. The registries presented research activities.

The European Society for Paediatric Endocrinology held its 60th annual meeting on 15-17 September 2022 in Rome, Italy. EuRRECa and EuRR-Bone were present with a joint exhibition booth. There, many came to visit the booth and discovered the use and objective of the registries. Research performed with the data collected in the registries was presented as well by Ana Priego. Find the abstracts here.

The ERICA ERN Data Management Strategy Workshop was held om 17-18 October 2022 in Heidelberg, Germany. EuRRECa and EuRR-Bone were represent including ePAG representatives. This workshop included discussions aimed at helping ERNs in setting up, maintaining and improving their registries. Face to face interaction facilitated learning about and from other registries. Learn more about this event here. To get access to the workshop presentations please contact the ERICA office.

The OIFE virtual Investigator Meeting took place on 18 November 2022. The registries presented current activity and data regarding Osteogenesis Imperfecta during this online meeting.

Upcoming Events

The Final EuRR-Bone meeting will be held in a hybrid modality, in Leiden, the Netherlands on 13 February 2023.

The first joint EuRRECa / EuRR-Bone symposium will take place on 3 April 2023 at the Academy building in Leiden, the Netherlands. Please register here for the symposium.

The 7th Endo-ERN General Assembly will be held on 4-5 April 2023 in Amsterdam, The Netherlands. You can register here for the event. The registries will have an exhibition booth with information materials and interactive demos.

The 50th annual meeting of the European Calcified Tissue Society will be taking place 15-18 April 2023 in Liverpool, UK with a pre congress on 14 April 2023. Find the abstracts here. The registries will have an exhibition booth with information materials and interactive demos.

The 25th annual meeting of the European Society of Endocrinology will be held on 13-16 May 2023 in Istanbul, Turkey. The registries will have an exhibition booth with information materials and interactive demos.

OIFE's topical meeting "Balancing Life with OI" will take place on 9-10 June 2023 in Stockholm, Sweden. You can register here.

The 61st European Society for Paediatric Endocrinology will hold its annual meeting on 21-23 September 2023 in The Hague, The Netherlands. The registries will have an exhibition booth with information materials and interactive demos.

EuRRECa website & twitter

Get regular updates on our activities at our website https://eurreca.net/

The website will provide an overview of the EuRRECa registries, including practical information and useful documents. For more updates, follow EuRRECa twitter profile @EuRRECa.

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