ESPN/ERA Registry

European Registry for Children on Renal Replacement Therapy


European Society for Paediatric Nephrology
European Renal Association - European Dialysis and Transplant Association
Department of Medical Informatics
Academic Medical Center
European Union

Amsterdam Office

Currently Marjolein Bonthuis and Iris Montez de Sousa are working for the Registy.

They are responsible for maintaining close contact with all contributors to the Registry. Other tasks include annual data collection and management, performing statistical analyses, preparing annual reports and scientific papers, and coordinating research activities of visiting researchers from various countries.

Marjolein Bonthuis has been involved in the Registry since 2010. First as PhD student, and later as Registry Coordinator. As of December 2022, Iris Montez de Sousa has joined the Registry. Below she will introduce herself.

I am Iris Montez de Sousa, original from Portugal. This year, I embarked on my PhD journey at the ESPN/ERA Registry, an exciting step in my academic career.

My educational background includes a Master's degree in Nutrition and Health, with a specialization in Epidemiology and Public Health, from Wageningen University, the Netherlands. During my time there, I came to appreciate the potential of clinical data in studying health-related outcomes and enhancing public health. This passion for research motivated me to seek opportunities to contribute to the field of clinical epidemiology. Hence, I am very enthusiastic with this PhD position at the ESPN/ERA Registry.

My primary research focuses on the epidemiology of kidney replacement therapy in young adults transitioning from paediatric to adult nephrology care. This patient group represents unique challenges due to their specific characteristics, including an increased risk of kidney transplant failure. Unfortunately, young adults who initiated kidney replacement therapy during childhood remain an understudied patient group. To bridge this knowledge gap, I will be analyzing both paediatric and adult datasets to gain valuable epidemiological insights into this population.

Additionally, I will have shared responsibilities related to data management, coordination, and data collection for the ESPN/ERA Registry.

The paediatric end-stage kidney disease (ESKD) population is a challenging and very interesting one, and the ESPN/ERA Registry provides a great basis for studying the epidemiology of childhood ESKD in Europe with the ultimate goal of improving their outcome. We very much appreciate your great enthusiasm participating in the Registry and are very grateful for our fruitful collaboration.