It is just a few days until the Endo-ERN General Assembly in Amsterdam.  This event is a great opportunity to network with your colleagues, and sign-up for Endo-ERN activities like virtual consultations (CPMS) or rare disease registries (EuRRECa).   More info below.  

In addition, in this newsletter we are delighted to showcase a European Reference Network (ERN)  partner-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.  ERICA will also attend the Endo-ERN General Assembly.  

EuRRECa: 1:1 at Endo-ERN General Assembly

Are you attending the Endo-ERN General Assembly (GA) next month in Amsterdam?  Consider meeting the EuRRECa team for a one-on-one session to help you get up and running with e-REC & Core Registry.  Or maybe you are an existing user with other questions.  

The team will be happy to help you with whatever your need.  Book your timeslot below.  

ERICA: Find your research partner

Are you planning a research project?  Wondering where you might find a partner?  Want to join an already funded project? 

ERNMATCH is a unique tool in development for researchers that will allow you to create an open call for collaboration to find partners for your research. 

The ERNMATCH is for ERN members only and allows researchers to find partners among the 24 ERNs that include more than 1400 healthcare units from more than 400 hospitals across all 27 EU Member States and Norway. 

If you have a project in development that needs partners please contact the ERICA Coordinating office info@erica-rd.eu or click the link below.  

ERICA: PROMs Repository for rare diseases

In partnership with patient communities and ePAGs, ERICA is facilitating the implementation of standardized Patient-Centred Outcome Measures (PCOMs) and Patient Reported Outcome Measures (PROMs) for rare disease research. 

A first version of the PROMs Repository is available click below.

The work package team continues to validate the various measurement tools by using the PROQOLID comprehensive online database.  As an Endo-ERN member you have free second level access to PROQOLID that includes over 5600 COAs.    You can request access by contacting the ERICA office by email info@erica-rd.eu.

ERICA webinar: Designing and conducting clinical trials in rare disease-what industries expect for partnering with clinical sites

This upcoming webinar that will cover the key elements for success when participating as investigator in an industry sponsored clinical trial.

There will be a specific emphasis on rare diseases, highlighting the key needs from the industry side, and the common reasons for failure.