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Dear ESHRE members,

The EuMAR project is approaching the end having built a solid path to the next phase of Europe's first MAR cycle-by-cycle registry.

At the start of this year, more than 30,000 patients across four countries (Estonia, Germany, Slovenia and Portugal) had been enrolled in the EuMAR pilot study. In February, a patient consultation was organised with a survey and patient focus groups and in March the Project Steering Committee met in Brussels to discuss the future of the EuMAR registry. In April, some of the EuMAR team members visited two of the pilot countries and met with fertility clinics and national competent authorities to discuss their participation and better facilitate the future collaboration.

Interested to know about what we did and what’s coming next? Then keep reading...

LAST 6 MONTHS

Pilot study insights

In only six months (July-December 2024), EuMAR collected MAR treatment data on more than 30,000 patients from 39 MAR centres in Estonia, Germany, Slovenia and Portugal.

The pilot study was conducted as a test of different data flow models, including manual and automatic EuMAR patient code requests and data submission, both from national registries and directly from clinics. The novelty? EuMAR will collect non-identifiable, cumulative data, including data on cross-border treatments, which will allow for the calculation of true cumulative outcomes.

The second phase of the study runs until September 2025, receiving pregnancy outcome data of the enrolled patients. The EuMAR registry will be validated by the end of this year.

Patient consultation

With the support of Fertility Europe and its member associations, 735 infertility patients responded to our survey about MAR data collection in Europe, and this is what we learned:

The top three nationalities of respondents were Spanish, German and Romanian
9 out of 10 patients would be in favour of sharing their infertility treatment data with a registry like EuMAR
8 out of 10 patients would have more trust in a fertility clinic participating in a registry like EuMAR
Only 4 in 10 patients are aware of health data registries
Advancing research into infertility treatment and improving the chances of a live birth are the most highly rated EuMAR benefits for patients

This feedback will be used to improve the design of the EuMAR registry, ensuring a more patient-centred approach.

Visits to Estonia and Slovenia

Some EuMAR members travelled to Estonia and Slovenia in April to meet with the National Competent Authorities, Professional Associations and MAR Centres to evaluate their participation in the pilot study and to plan for their continued participation in EuMAR.

We would like to thank all the institutions and representatives of the EuMAR pilot countries who attended the meetings and contributed to the pilot study’s data submission. We look forward to our extended collaboration!

NEXT 6 MONTHS

‘Save the Date’ – Dissemination Conference

On Friday 12 December, EuMAR will host the final dissemination conference in Brussels. This event will present the full results of the pilot study, the differences between the data submission models, the feasibility and the importance for European professionals and policy makers to invest in the first cycle-by-cycle MAR registry in the continent.

More information about this event will be shared soon.

Want to participate in EuMAR?

After validating the EuMAR registry in the pilot study, we will prepare to expand to other countries. If you would like to know more about how your country could participate by submitting data to the EuMAR data collection in the future, you can get in touch with us at eumar@eshre.eu

We hope you find this information useful. For questions, comments, feedback or suggestions please reply to this e-mail and tell us exactly what you think.

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