In this last newsletter of 2024 you will find stories of recent activities, as well as information to support your membership activities in 2025.    

May we take this opportunity to wish you and yours a happy holiday season!

Endo-ERN team

IMPORTANT: Continuous Monitoring & Performance Score Activities

The Continuous Monitoring (CM) exercise will start 1 January 2025, so completing these tasks before then will give you a headstart and make the exercise much easier! 

Key tasks to complete before the end of 2024:  

• complete/update your e-REC to include all 2024 data by the system deadline 
• collect a summary of clinical trials/ studies from colleagues that meet our criteria 
• update your EU login account settings to use the secure APP, not SMS-verification
• ensure your HCP website address is correct on the Endo-ERN website, and that your website includes a mention of your membership and/or a link to Endo-ERN website.   

There will be more communication and informative webinars about the CM process in early January.  

PROGRESS: CPMS 2.0

The ongoing migration and launch of the new #virtualconsultation system CPMS 2.0 will continue during the coming weeks until mid-January. 

You are reminded about of the following:

• Please do not enter any NEW cases in to the existing CPMS system without notifying the helpdesk
• You may notice an increase in the notifications you receive from CPMS as part of the closing activity on the original system and actions to facilitate the use of CPMS 2.0.  Take action as required.  
• As soon as the CPMS 2.0 system is online recurring meetings will be reinstated.  Any scheduled recurring meetings for January will  not take place.  

Your support is appreciated as we transition to CPMS 2.0.  If you have any questions or concerns don't hesitiate to contact the CPMS Helpdesk.  

REGISTRIES: Develop a condition-specific module

The EuRREB Core Registry collects common and condition specific datasets for a wide range of endocrine and bone conditions.  

You can express your interest in developing a new module by contacting the registries team before 15 April, 2025.

Include as much information as you have available and during the upcoming Endo-ERN GA and ESE/ESPE Joint Congress May 2025, you can meet with the EuRREB team to go over your plans and discuss the next steps.

ENGAGED: Endo-ERN ePAGs Camp Grandir

Our ever busy ePAG Nathalie Ferard of Association Grandir was kind enough to share an update on Camp Grandir a unique retreat that is organised for children aged 6-12 that are currently receiving growth hormone treatment. 

REGISTER: Upcoming webinars

Endo-ERN experts continue to deliver informative webinars that increases the expertise in the network.  Accreditation is being sought for these webinars when possible, check individual listings.    

Adrenoleukodystrophy:  Presentation of two siblings

The changing landscape of adult GH deficiency

Care of adult patients with Klinefelter syndrome 

Update SGA, GH treatment beyond childhood

Long-term outcomes in CAIS

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

FIRST: ERN Research Conference

Last week, the European Rare Disease Research Coordination and Support Action consortium (ERICA) hosted the first ERN Research Conference in Udine supported by MetabERN. 

We are delighted that Endo-ERN secured two prizes at the event:  Edward Visser, Erasmus MC for Best Presentation Oral: Clinical Trials and Best Poster for research led by ePAGs Johan de Graaf, Petra Brugmann with Emily White (Endo-ERN) and Dirk de Rijdt (European Society of Endocrinology).  

Another Endo-ERN poster was in the Best of 25 category:   Harmonizing Treatment and Improving Outcomes for Pediatric Adrenocortical Tumors:  A Pan-European Prospective Clinical Trial by EXPeRT and ERN 

ENGAGED: Endo-ERN ePAGs Conference Presentation

Lexi Breen Endo-ERN ePAG, was a speaker at the University College Union (UCU), Hybrid Equality Conference at Aston University in Birmingham, UK, held 28th ? 30th November 2024, attended by over 180 delegates, representing 115 educational Institutions attended.