EU-ROP newsletter – 2nd edition – March 2022

It is hard to believe that it is already March – and we hope you had a good start into the year.

In our last newsletter, we could report that the first center outside Germany had obtained a positive Ethics vote for their EU-ROP participation. In the meantime, several other centers have joined and we have now 12 sites with positive Ethics vote outside Germany. From the 19 German centers that were part of the original German ROP register 17 could successfully roll over into EU-ROP with renewed Ethics vote at each site.

And on an even more positive note: The first patient from a site outside Germany was entered into EU-ROP (details see below). Together with the 72 infants from German centers we now have 73 infants in the registry and were able to submit our very first interim analysis as conference abstract to EURETINA.

Below you will find more information about what happened over the last few months in the EU-ROP project.

Thank you all for your interest in the project, your participation and support!

Andreas Stahl & Johanna Pfeil

Getting up and running: Additional centers in several countries obtain Ethics approval for the EU-ROP registry

Over the last few months, 11 new centers have obtained their local Ethics vote!

Congratulations to

  • Acibadem City Clinic Tokuda University Hospital EAD in Sofia, Bulgaria
  • České Budějovice Hospital in Budějovice, The Czech Republic
  • Medical University of Bialystok Children’s Clinical Hospital in Bialystok, Poland
  • Children's Memorial Health Institute in Warsaw, Poland
  • University and Polytechnic Hospital La Fe in Valencia, Spain
  • Koc University Hospital in Istanbul, Turkey
  • Uludag University Faculty of Medicine in Bursa, Turkey
  • Ankara University in Ankara, Turkey
  • Başkent University in Ankara, Turkey
  • Umraniye Research and Education Hospital in Istanbul, Turkey
  • Ordu University Medical Faculty in Altin Ordu, Turkey

 

First patient outside Germany entered into the EU-ROP database

Another big milestone in the EU-ROP project can be ticked off: the first patient outside Germany was entered into the EU-ROP database. Now the EU-ROP project is truly becoming an international registry!

A very big Thank you to Dr. Aslihan Uzun from Ordu University in Turkey for entering the first patient into the EU-ROP database. We hope that other centers and countries will soon follow.

 

Does treatment-requiring ROP qualify as a rare disease?

February 28th was World Rare Disease Day and we would like to draw your attention to the fact that treatment-requiring ROP may be regarded a rare disease. A rare disease is defined by an incidence of less than 1 in 2.000. One baby in 10 is born preterm, but only the smallest and sickest preterm born infants develop a severe ROP. Exact incidences for treatment-requiring ROP are difficult to obtain. And that is exactly where the EU-ROP project wants to develop into a source for reliable data in the future.

 

First interims analysis from EU-ROP submitted as abstract to the EURETINA

Mid-February we conducted a first interim analysis of the EU-ROP data. The submitted abstract presents data on the first 50 patients, their baseline demographic parameters like birth weight, age at birth, weight and age at treatment and (re-)treatment parameters. We hope that the abstract will be accepted and that it will help to raise awareness for the project and recruit additional interested centers.

Only data from German centers was entered until the abstract submission deadline, but we still wanted to use the opportunity to present the EU-ROP project at the EURETINA meeting in fall 2022. And by then we will have more countries contributing to the registry and can update our data for the conference presentation.

 

Want to learn more about the EU-ROP project?

The EU-ROP principal investigator (Prof. Andreas Stahl) and the study coordinator (Dr. Johanna Pfeil) will speak at the eSeminar “EU-ROP – a newly established European registry for Retinopathy of Prematurity” which is part of the Vision Care Academy supported by Natus®. In this seminar we will give detailed insights into the study design and objectives of the EU-ROP registry, the parameters collected in the database, the current status of the project and discuss why such registries are important.

 

You can register for the seminar via the following link: https://register.gotowebinar.com/register/3870561715057652748

 

European registry on retinopathy of prematurity

Contact

Prof. Dr. med. Andreas Stahl, FEBO
University Medical Center Greifswald
Department of Ophthalmology

Dr. Johanna Pfeil
University Medical Center Greifswald
Department of Ophthalmology

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