Endo-ERN Newsletter in partnership with EuRRECa

This month's newsletter tells you more about the EuRRECa and EuRR-Bone registries,  a growing resource for researchers studying rare endocrine and bone conditions.  e-REC, one of the registries is an important part of the annual Continuous Monitoring (CM) programme for Endo-ERN members. 

Check it out below and enjoy the read!

Endo-ERN team 

EuRRECa: What We Do

EuRRECa and EuRR-Bone collect data on conditions covered by Endo-ERN by using 2 registry platforms:

  • The Core Registry captures a set of common data elements that takes 5 minutes to complete. Additionally, sets of variables collecting condition-specific data have been built into this platform for 6 endocrine conditions.   

You can find out more about the condition-specific modules and the experts behind them on our website using the link below.  

  • e-REC (e-reporting programme) helps understand the occurrence of rare endocrine conditions by capturing new encounters on a monthly basis. The use of this platform is especially important for Endo-ERN members, since e-REC is the preferred source of the number of new cases  reported yearly for the Continuous Monitoring Programme.
EuRRECa logo

DROP-IN: Discover EuRRECa/EuRR-Bone

Do you need help getting up and running with the registries?  Meet us online and we will help guide you through our registries.  

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

Drop-in session are available twice a month - next dates are 26 July & 23 August - you can joining a ZOOM session and ask anything related to our registries. 

Please find an overview of all of our drop-in sessions using the link below. 

For more information feel free to contact us using the link below. 

We are here to assist you! 


RESOURCE: Data Dictionaries now Online!

You now can find all the data dictionaries regarding the e-REC, Core Registry and condition-specific modules online.  Check it out using the link below.


The 61st Annual European Society for Paediatric Endocrinology (ESPE) will take place 21-23 September in The Hague, Netherlands.

If you or a member of your team are attending, please complete the survey and let us know.  

CONTRIBUTE: Survey exploring testosterone methodology

You are kindly invited to participate in a survey exploring testosterone methodology in clinical units and laboratories throughout Europe. Endo-ERN members and are managing the survey.

Currently, different methods are used to measure testosterone and SHBG, hampering harmonized clinical use of (free) testosterone. 

OPPORTUNITY: Post-doc position at IRCCS Istituto Auxologico Italiano

Two exciting opportunities are available at one of Endo-ERN’s reference centres!

Both positions are available at the laboratory of Prof. Luca Persani at to work in the field of congenital thyroid disorders.

You will find a link to the detailed job description and application instructions below. 



REGISTER: Endo-ERN Webinars

Looking for education from rare disease experts?  Check out the member led webinars planned below:  

  • Klinefelter syndrome - from genomics to the clinic
  • Non-classic CAH - an underdiagnosed condition
  • Primary adrenal insufficiency - diagnosis, treatment and follow-up illustrated by cases