European Registries for Rare Endocrine and Bone conditions (EuRREB) Update

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Welcome to the dedicated newsletter which showcases the resources and activites of European Registries for Rare Endocrine and Bone Conditions (EuRREB). 

A busy time for for EuRREB with several new activities including the EuRREB Participating Centre Voucher, the launch of several new condition-specific modules and a new publication.  To find out more about registries you are invited to attend the webinar at the end of the month.  

Enjoy the read!

Endo-ERN team

 

P.S.  We are migrating to a topic-based newsletter this summer and invite you to update your preferences following the instructions at the bottom of the newsletter.  To keep receiving this newsletter choose Rare disease research including registries.  

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APPLY: EuRREB Participating Centre Voucher

The European Registries for Rare Endocrine and Bone Conditions (EuRREB) has launched a new initiative: the EuRREB Participating Centre Voucher. This voucher will give financial support to either new, eligible centres to become an active center in the registries (Center Start-Up Voucher), or to already active centres to be able to contribute to one of the EuRREB studies (Advanced Centre Voucher.)

NEW: EuRREB publication

This publication from our EuRREB colleagues, Developing a Standardised Dataset for Natural History Studies in Fibrous Dysplasia/McCune-Albright Syndrome (FD/MAS), is a key milestone in improving clinical research and care for people living with FD/MAS. By establishing a harmonised dataset, we aim to support international collaboartion, enable meaningful data comparisions, and drive forward patient-centered research.  

NEW: EuRREB condition-specific modules

Our colleagues in the European Registries for Rare Endocrine and Bone Conditions (EuRREB) are excited to announce that the following modules are live on the Core Registry Platform:  

These condition-specific modules activate automatically once a patient with the relevant condition is entered into the system making data collection seamless and efficient.  

CHECK OUT: NEW EuRREB website

EuRREB.eu is the new and improved website for Europe’s rare disease registry for Rare Endocrine and Bone Conditions.

On the new site you will find overview pages specifically tailored to our main visitors. These overview pages help to guide you to the information you are looking for whether you are a clinican, researcher or patient.  

ATTEND: Registries Drop-In session

Every second Friday (at 2pm) and fourth Wednesday (at 4pm) of every month EuRREB organises an online Drop-In (support) session via Zoom.

During these online Drop-In sessions we are available to answer any questions you have about e-REC (e-reporting of Rare Conditions) and Core Registry.  The team can even help to set up your account, walk you through the platform and help you to enter data.  

No need to register for the session- just come along!  

YOUR DATA: At your appointment

Did you know that your Core Registry data is visible to you and your doctor?  It’s true!  Whether your doctor enters all your data, or you make the updates yourself, both of you can see the data in real-time. 

Examining your responses to the EQ5D could be a good way to discuss your quality of life with your doctor on your visits. 

Find out more about contributing data to the Core registry. 

REGISTER: Upcoming webinars

Endo-ERN experts continue to deliver informative webinars that increases the expertise in the network.  

June:  Cushing’s Syndrome 

June:  Congenital combined pituitary hormone deficiency in Europe 

June:  Rare disease research and the value of registries 

September:  ESE Talks webinar…CAH:  diagnostic and therapeutic challenges across the lifespan

September:  Genotype-phenotype correlations in CAH 

November:  ESE Talks…Recent therapeutic perspectives for rare endocrine diseases (multiple examples)

Register now for these upcoming webinars.  Remember if you cannot attend live, register anyway and you will receive a recording.

 

REGISTER: Upcoming Conferences and Training Events

Upcoming events that might be of interest to you or your team:

June:  SDMregistries Virtual Meeting 2025

July16th European Paediatric Neurology Society Congress 

September:  European Society for Paediatric Endocrinology (ESPE) and French rare diseases healthcare network (OSCAR)

EuRREB Registries Symposium

ESE Young Endocrinologists and Scientists (EYES)

October:  World Orphan Drug Congress 2025 

International Consortium for Fibrous Dysplasia and McCune-Albright Syndrome (ICFDMAS)

December:  European Neuroendocrine Association

UPDATE: Newsletter Preferences

To update your newsletter preferences go to the top of this newsletter and click on Update Profile.  You can then adjust your preferred topics to ensure that you receive a newsletter that contains information that you are interested in.  This short video shows you how to make the update.  

 

This entry was posted in Newsletter.