Between the 5-year evaluation, Continuous Monitoring (CM), and of course the General Assembly (GA), the first months of 2023 have been a busy time for Endo-ERN and our members.   It is still busy with many webinars planned before the summer holiday season begins.  You can check them out below.

In this newsletter we are delighted to showcase the activities of the European Registries for Rare Endocrine Conditions (EuRRECa).  EuRRECa is Endo-ERN’s work package 5 and from 2023 will be a required aspect of the CM programme.

REGISTER: Upcoming webinars

There are several interesting webinars planned for the coming weeks:

• Puberty induction in the two sexes - a case based discussion
• ESE Talks...Use of EuRRECa databases to enhance our understanding of XLH and parathyroid carcinoma
• Management of thyroid nodules in children (ETA guidelines)
• Getting to Know Virtual Consultations 

Register using the webinar link below.  You can also view recordings of past webinars on our YouTube channel - subscribe now!

What is EuRRECa?

EuRRECa is in close collaboration with ERN BOND’s EuRR-Bone. The aim of EuRRECa and EuRR-Bone is to offer patients, health care professionals, and researchers the opportunity to participate and use high-quality, patient-centred registries for rare endocrine and bone/mineral conditions.”

e-REC (e-reporting)

This registry only captures new clinical encounters and no personal data.  From 2023 e-REC will be an integral part of the Endo-ERN Continuous Monitoring (CM) programme, with a requirement for patient data (outcome measure number TBD) to be submitted via the e-REC registry. 

Core Registry

Core Registry captures Patient Reported Outcome Measures (PROMs) and allows a clinician to monitor a patient for a longer period.  It also includes Condition Specific Modules which cover the work of dedicated multidisciplinary study groups.

NOW AVAILABLE: Registry Annual Reports

Covering activity from June 2019 - December 2022 the registry reports are now available.  A treasure trove of information these reports are well worth a read.  Highlights include:  

e-REC 

• Over 20,000 (14100 adult, 5997 children) have been reported
• Hypothal & Pituitary (MTG6) has the most reported conditions 
• Suspected diagnosis are higher in children compared to adults  

Core Registry

• Over 1100 records registered 
• Pituitary has the most registered conditions (391)
• 238 module and outcomes completed  

DROP-IN: Discover EuRRECa

Do you need help getting up and running with the registries? 

It is especially important for Endo-ERN members and the requirement to report your patient numbers for Continuous Monitoring (CM) for 2023.

Drop-in sessions are available twice a month - next dates 24 May & 9 June - you can join a Zoom session and ask anything related to registries.  

Click the link below for more information.