The year is kicking off with lots of activity including request to submit data to new surveys.  CPMS 2.0 is on the way and Continuous Monitoring is ongoing. 

You will find helpful information below.  

Enjoy the read!

Endo-ERN team

IMPORTANT: Continuous Monitoring & Performance Score Activities

The Continuous Monitoring (CM) exercise is ongoing.  The link is now live for you to add your publications via the website.  These will be validated as part of the CM process.    

PROGRESS: CPMS 2.0

The ongoing migration and launch of the new #virtualconsultation system CPMS 2.0 is ongoing.  Endo-ERN will be using CPMS 2.0 by February 1^st 2025. 

Please note the following to help you prepare for the move: 

• The time has passed for you to sign off panels in the existing CPMS
• No new users can join the old system and will be added instead to the new system once live
• If you have open panels/discussion these can remain open, but will be unavailable for interaction during the migration. The discussion can continue in the new system. 

Any questions please contact the CPMS Helpdesk.           

Please note if is likely you have received this information from the EU already, it is provided here for completeness and to offer personal support if required.  

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.

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

ESE Talks...Rare Diseases Hypothalamic Obesity:  Treatment modalities and prerequisites for treatment efficacy

Long-term outcomes in CAIS

ESPE Connect webinar webinar on Monogemic, neonatal and rare diabetes 

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

COMPLETE: Endo-ERN Transition of Care Working Group Survey

The Endo-ERN Transition of Care Working Group, invites you to complete this survey.

The survey aims to gather valuable insights into the current practices, challenges, and opportunities in managing the transition of care for patients with rare endocrine diseases, focusing on both pediatric and adult care perspectives.

COMPLETE: European Partnership for Personalised Medicine Survey

The European Partnership for Personalised Medicine is currently running a survey on Unmet needs in personalised medicine managment and the potential of personalised health technologies in healthcare professionals.  The input of as many healthcare professionals and patients as possible is highly appreciated. 

COMPLETE: Development of Child and Orphan Device (DeCODe) Survey

The Development of Child and Orphan Device (DeCODe) project, co-funded by the European Commission under EU4Health, is on a mission to revolutionise healthcare for children living with rare diseases. They’re accelerating the development of vital medical devices that enhance care and improve lives. 

As part of this effort, they’re mapping the ecosystem of paediatric and orphan medical devices to identify stakeholders, tools, initiatives, and supports that make a difference in this critical field—and they need YOUR input!  Please take 2-3 minutes to complete the survey.  

REGISTER: Upcoming Conferences and Training Events

Upcoming events and e-learning that might be of interest to you or your team:

Endo-ERN Endorsed:  7th Conference Transition Adolescence and Young Adults - Endocrine Management 

Joint Congress of European Society of Endocrinology (ESE) and European Society for Paediatric Endocrinology (ESPE) 2025, Copenhagen Denmark

Endo-ERN Endorsed:  5th CAre for PITuitary Adenoma Leiden (CAPITAL) Course

Endo-ERN Endorsed:  24th Advanced Postgraduate Course on Growth and Growth Disorders 

Endo-ERN Endorsed:  Symposium Prader-Willi Syndrome

Endo-ERN Endorsed:  VIIIth ISPAD/VAPES Postgraduate Course and Conference - Diabetes and Rare Disease Course

ESE Young Endocrinologists and Scientists (EYES)

16th European Paediatric Neurology Society Congress 

Our colleagues at ERN-EYE have an e-learning course on Inherital Retinal Diseases which might be of interest.