INTRO:
An EuMAR project stakeholder meeting was held on the 5th of December 2023 presenting the status and receiving feedback from participants being National Competent Authorities (NCA), patient interest organisations, fertility professionals and other parties of relevance to the fertility sector and its future developments.
Chairman of EuMAR, Professor Dr Carlos Calhaz-Jorge was opening the meeting highlighting ambitions of the project to e.g. be tracking CBRC (cross border reproductive care) within the EU, establish a donor registry at an EU level and develop a platform to register fertility cycle data, where countries and clinics anonymously contribute.
Overall Aim of the project (as defined at EuMAR):
To establish the first overarching European, standardised, web-based data registry, containing high-quality cycle-by-cycle data entries from medical professionals across the EU, facilitating data sharing for open science across institutes and allowing the longitudinal and cross-border follow-up of medically assisted reproduction (MAR) data.
Some general objectives for the project to meet its overall Aim:
– Moving data collection from retrospective aggregated to prospective cycle-by-cycle.
– Making data FAIR for all stakeholders (patients, public, NCA’s at country and EU level).
– Covering cross-border care.
– Achieving full traceability of MAR treatments.
– Interoperating with other EU initiatives (SoHO platform, EHDS) to avoid duplication of work.
Situation today with data collection in Europe:
A status of existing data collection systems were introduced:
The status quo illustrate challenges of different systems and organisations to manage data, different measures are being used, different regulations e.g. whether mandatory or not, different technological solutions and lacking overview/coherence on CBRC/sequential treatments.
What is next for the EuMAR project?
So far the project being highly complex in nature has been in its developing phase, and various deliverables are now progressing into being integrated and discussed with NCA’s as well as pilot studies will be undertaken with selected countries/clinics to start collection of data to monitor and validate the system throughout 2024/2025.
Timeline for the EuMAR project:
Full program of the stakeholder meeting can be found here: https://www.eshre.eu/Data-collection-and-research/EuMAR/Events/Stakeholder-event—5-December-2023