Our colleagues at European Registries for Rare Endocrine and Bone conditions (EuRREB) recently released their Annual Reports for Core Registry and e-REC.  You will find these reports and more on their recently updated website EuRREB.eu  

On the website you can register for a drop-in session, find out about ethics approval requirements, patient information and much more.  

Perhaps you are already aware of rare disease registries, the aim of this newsletter is to provide more information about how you might get involved.  

If you would like to continue to receive information about registries please update your preferences following the instructions below and choose Rare disease research including registries.

Enjoy the read!

Endo-ERN team

NEW: EuRREB Core Registry & e-REC annual reports

Our colleagues in EuRREB have recently published their Core Registry and e-REC Annual Reports which showcase significant growth in partipation and data collection. Over the past years, the introduction of condition-specific modules has been a key driver of engagement and improving insights into rare conditions.

CONTRIBUTE: EuRREB Core Registry

The Core Registry collects common and condition specific datasets for a wide-range of endocrine and bone conditions with the aim of improving clinical care through research.  The Core Registry allows clinicians to monitor a patient for a longer period of time and includes Patient Reported Outcome Measures (PROMs).  Because more detailed data is collected, the Core Registry can be used in more in-depth rare disease research.    

NEW ENCOUNTERS: e-REC

e-REC is an electronic reporting programme that captures new clinical encounters to objectively map rare conditions.  You do not need to be a member of an European Reference Network to make submissions to e-REC.  Endo-ERN members are required to submit patients as part of the Continuous Monitoring (CM) exercise.   

RICH DATA: Condition Specific Modules

Condition specific modules allow researchers to gather data that provides insights to unique aspects of individual rare conditions.  Aspects of the individual condition can be pinpointed and gathered allowing unique data for each rare condition. 

This type of collaboration increases the amount of condition specific data that is collected with the expectation of providing detailed evidence-based clinically relevant insights. 

Find out about the Condition Specific modules that are currently active.

PARTICIPATE: Your data, your way

By using the valuable patient data in the Core Registry it is hoped that rare disease researchers can gain insights in to the diagnosis, treatment and quality of life of patients living with rare endocrine and bone conditions.  This is only possible because patients give consent to allow their data in to the Core Registry. 

Find out how you can start contributing your data to rare disease research and support improvements to patient care. 

REGISTER: Upcoming webinars

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

June: Congenital combined pituitary hormone deficiency (CCPHD) in Europe

June:  Novel monitoring tools to detect chronic over- or under treatment in children in CAH 

June:  Rare disease research and the value of registries 

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:  CAre for PITuitary Adenoma Leiden (CAPITAL) Course 

June:  Advanced Postgraduate Course on Growth and Growth Disorders 

July:  16th European Paediatric Neurology Society Congress 

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

September:  ESE Young Endocrinologists and Scientists (EYES)

October:  World Orphan Drug Congress 2025 

UPDATE: Newsletter Preferences

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