This month we are delighted to showcase a European Reference Network (ERN) project European Rare Disease Research Coordination and Support Action consortium (ERICA).  The aim of ERICA, in partnership with Endo-ERN (and all ERNs), is to optimize the ERN's research and innovation capacity.  Check out the resources that are available to ERN members and their institutions to create research synergies.  

REGISTER: ERICA General Assembly

The ERICA GA is just a few weeks away and it is the perfect opportunity to find out about everything ERICA.  It is not too late to register!  The event will be held in Madrid, Spain July 6-7, 2023.  

You can network with other active ERN researchers and check in on the progress of ERN related research activities.  

Our programme features an expert speaker from the National Institute of Health (NIH), special sessions on Together4RD Project and on new RD Partnership and Clinical Research Network.  

Deadline for registration is June 30.  Check out the full programme below.  

RESOURCE: PROMs Repository

ERICA's open-access tool Patient reported Outcomes Measures (PROMs) Repository was updated June 1.  

The PROM's repository is an open-access tool centralizing information on more than 1080 relevant measures for rare disease research (a joint collaboration between Orphanet, Mapi Research Trust/ICON and with the active contribution of all ERNs and ePAGs led by ERN EuroBloodNet).  

The new update has been enriched with: 

• Observer-Reported Outcome Measures (ObsROMs) to better cover pediatric population
• PROMs & ObsROMs measuring quality of life
• PROMs &ObsROMs recently developed for rare diseases                                                                                    

You now have access to 1080 measures including:

• 444 measures specifically developed for rare disease
• 145 quality of life-specific measures
• 383 functioning-specific measures
• 109 measures related to clinical practice
• 227 of the measures were requested by ERNs
• 18 Endo-ERN specific PCOMs/PROMs 

This repository is a dynamic and evolving service, and all Endo-ERN members are kindly invited to contribute by suggesting new measures they would like to add to the repository.  ERICA can also provide free access to the repository via PROQOLID?.

Check out the links below.  

RESOURCES: ERICA Clinical Trial Support

To stimulate collaboration of inter-ERN clinical trials on diseases that are covered by multiple ERNs, a series of WP4 Clinical Trial Support webinars are scheduled to inform ERNs about specific aspects of clinical trial research.  You will find recordings and factsheets at the link below.   

Endo-ERN Endorsed Event: 4th CAre for PITuitary Adenoma Leiden (CAPITAL) Course

Endo-ERN has endorsed an upcoming course by Endo-ERN HCP, Leiden University Medical Center (LUMC).

The 4th CAre for PITuitary Adenoma Leiden (CAPITAL) Course will be held September 21-22, 2023 at LUMC. This event is attended by experienced neurosurgeons, endocrinologists, and other professionals from all over the world. 

REGISTER: Endo-ERN Webinars

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

• ESE Talks...Use of EuRRECa databases to enhance our understanding of XLH and parathyroid carcinoma
• Management of thyroid nodules in children (ETA guidelines)
• Getting to Know Virtual Consultations 
• Klinefelter syndrome - from genomics to the clinic 

You can also view recordings of past webinars on our YouTube channel - subscribe now.  

CONTRIBUTE: CPMS User Experience (UX)

Are you a current CPMS user?  Are you not using CPMS because you find it difficult to use?  Or are you just interested in medical software?

DG Sante is currently developing CPMS 2.0 and would like to create a pool of UX testers as part of the development process.  No matter your experience with CPMS (every day, what is CPMS?) you are invited to join the pool.  The sessions will be organized once every month or every 2 months and they will take around 15-20 minutes.  

Virtual consultations are the founding activity of ERNs and CPMS is the software that powers these cross-border consultations. 

Please consider joining the UX tester pool to improve this vital tool.

RESOURCES: Endo-ERN

The Endo-ERN website continues to be THE resource for everything you want to know about Endo-ERN and we are constantly updating with new tools and information.  

We highlight 3 "bookmark worthy" pages that you might find interesting.  

Clinical Trials Repository:  searchable database with Endo-ERN member trials.

Publication page:  a listing of Endo-ERN publications going back to 2018.

Patient information:  a developing resource for international patient information.  

If you aren't following our social media, please do so using the links below.  We showcase resources from the website and always announce new webinars there first.