For more than two decades, the European IVF Monitoring (EIM) consortium has been the reference group for data collection in fertility within Europe. In 2001, EIM published findings from the first European survey on ART carried out in 1997 (1). Since then, EIM’s annual reports have featured data sets that have become increasingly more complete over time. Registry data can demonstrate ongoing changes under real-life conditions based on results from large cohorts. To date, the EIM consortium of ESHRE has reported on over 13 million treatment cycles resulting in the birth of more than 2 million infants.
However, there are more than 50 countries in Europe each with diverse cultural, political, economic and legal systems. National data registers dealing with reproduction often do not exist which means Europe-wide registration of activities in ART is difficult. Despite these well-known challenges associated with heterogeneous data collection systems and the lack of standardised indicators, the participation rate at the country level by means of the national representatives is high. EIM’s annual reports summarise the efficacy and trends of fertility treatments.
While valuable, the current EIM data collection is limited which makes it hard to calculate parameters from the information gathered. For example, details on children born after ART are scarce and incomplete; and data on cross-border care and long-term storage remain virtually unregistered. In addition, data collection is diverse between countries, leading to considerable differences in the quality of information received. As a result, the data should be interpreted with caution. Quality can be improved in several ways including the harmonisation of data collection systems across countries and registration of indicators, taking local practices into account.
European monitoring of Medically Assisted Reproduction (EuMAR) is the new kid on the block. This three-year project (2023-2025) is aimed at improving EIM but without compromising its daily functioning. Co-funded by the EU4Health programme at the European Commission, EuMAR’s goal is to develop a pan-European registry of prospective cycle-by-cycle data on the use and outcomes of medically assisted reproduction (MAR) treatments.
The vision for this registry is to improve transparency and accessibility of data, quality assurance and surveillance; and standardise parameters and definitions for data comparison. Moreover, the project aims to increase the flexibility to connect to other registries in the future; and calculate cumulative outcomes and identify cross-border care trends. Last, but probably most important, the project aims to be patient-centred: EuMAR is committed to ensuring that people’s perspectives are heard, and they have power over their own treatment data, rather than the current top-down approach. Ultimately, EIM and EuMAR share the same goals.
Since EuMAR’s objectives are extensive and wide-ranging, the project was divided into several work packages;
- Dissemination and communication of the project
- Integration in national policies and sustainability
- Selection and definition of MAR parameters
- An IT solution for the registry including an individual reproductive care code
- A pilot study to test the new data flow and incorporate the results
EuMAR is not a new version of EIM. A metaphor for EuMAR would be a blastocyst, genetically similar to EIM and with great potential, but whose  future is dependent on successful implantation. The EuMAR team will work on the packages, thus cultivating the project’s future’s potential.
In summary, EIM was established to collect, process and publish regional data for Europe on direct clinical results and side-effects; follow-up children’s well-being; and on the availability and structure of services in the different countries. EuMAR aims to build on these national-level registries and develop a pan-European registry of prospective cycle-by-cycle data on the use and outcomes of MAR treatments.
EuMAR addresses the need for more transparency, surveillance and biovigilance in MAR across country borders, including better and harmonised data on the safety of MAR for offspring, donors and recipients. It also avoids the duplication of data collection and ensures accessibility.
References:
1 The European IVF-monitoring programme (EIM), for the European Society of Human Reproduction and Embryology (ESHRE), Assisted reproductive technology in Europe, 2001. Results generated from European registers by ESHRE. Human Reprod vol 20 (5) 1 May 2005; 1158–1176; https://doi.org/10.1093/humrep/deh755
You have to be logged in and an ESHRE member in order to comment.