Meeting of the ERN Expert Platform for Newborn Screening
We are pleased to invite you to the launch meeting of the ERN Expert Platform for Newborn Screening that will be held on Tuesday 14th September at 10:00-12:00 CET.
Description
Europe is home to the most equal societies in the world, the highest standards in working conditions, and broad social protection. A Europe who provides its assistance and support to the most vulnerable of groups – infants with rare diseases – would underline the interest of European decision makers for their citizen’s health and well-being. That is why, on 11 February 2021, a roundtable was convened by ERN-Rita, MetabERN and Screen4Rare to discuss and consider how European References Networks (ERNs) could contribute to an EU-wide approach to newborn screening for rare diseases in the European Union (EU).
The meeting was structured around the development of an ERN initiative on newborn screening for rare diseases (provisionally named the ERN Expert Platform for Newborn Screening) because of the key role they can play in advancing newborn screening for rare diseases in the EU.
The Screen4Rare Call to Action on Newborn Screening for Rare Diseases – which has received the support of 30 Members of the European Parliament, ERN RITA, and MetabERN – formed the core of the meeting’s discussion. The ability of ERNs when it comes to the generation and centralisation of data aligns perfectly with Screen4Rare’s proposal for the EU to become a central point for data collection and information on rare diseases newborn screening practices.
On 14 September, attendees will focus on several potential streams of work which could form the basis for the ERNs future work:
- The first stream would consist in a research project focused on identifying gaps and differences between the NBS programs in EU Member States in order to generate data lending towards the development of a Newborn Screening blueprint across the EU’s Member States.
- The second stream would propose ‘case definitions’ for newborn screening and approaches to confirmatory testing. This would underpin disease registries and the collection of reliable information to serve patients.
- The third stream would look towards registries and how to support interoperable registry data.
Call for Participants
Participants and organisations affiliated with an ERN who wish to express their interest in joining the ERN Expert Platform are invited to reach out to Screen4Rare’s secretariat at y.aleksandrov@rpp-group.com. Organisations with an interest in the topic are invited to respond to the survey attached to this email and to nominate one to two representatives at the very most to take part in the ERN expert platform and take an active part in the Meeting.
We remain at your disposal if you have any questions.
You will find the connexion details for the meeting below.
Join Zoom Meeting
https://us02web.zoom.us/j/83200752027
Meeting ID: 832 0075 2027
Find your local number: https://us02web.zoom.us/u/kTGWo7wVa
