Main research areas
MARYs Data Powerhouse was established following a donation from the Børneriget Foundation. Since then, the center has also received support from the Novo Nordisk Foundation.
Register-based epidemiological research
We specialize in long-term follow-up to investigate, potentially alter, and optimize healthcare pathways.
Analysis of data from randomized, controlled clinical trials on children, adolescents, and pregnant women
We provide our biostatistical expertise in collaborations for analyzing data from randomized, controlled clinical trials on children, adolescents, and pregnant women.
Optimized data accessibility and understanding
We aim to promote collaboration between experienced clinicians, register researchers, and statisticians to ensure that data is accessible and comprehensible.
Data-driven management
We focus on using data to study and optimize clinical treatment, care, and patient pathways.
We are established through close collaboration between clinicians and epidemiologists at Aarhus University Hospital, Aarhus University, the University of Southern Denmark, VIVE, and Mary Elizabeth’s Hospital. The center is affiliated with Mary Elizabeth’s Hospital, the upcoming hospital for children, adolescents, pregnant women, and their families, which opens in 2026.
Current team members
Andreas Jensen, senior researcher
Ann-Sophie Buchardt, statistician
Tobias Kraghold, PhD student
Pi Vejsig Madsen, PhD student
Amalie Bach Nielsen, PhD student
Helene Kildegaard Jensen, postdoc
Maj Beldring Henningsen, statistician
Steering committee
The center operates with the premise that results are quickly shared and gain national relevance. Our steering committee consists of the following experts in Danish epidemiology and health economics:
Helene Kildegaard Jensen, Rigshospitalet
Professor Henrik Toft Sørensen, Aarhus University Hospital and Aarhus University
Professor Jakob Kjellberg, VIVE
Professor Søren Paaske Johnsen, Aalborg University
Professor Øjvind Lidegaard, Rigshospitalet
The center is led by Professor Lone Graff Stensballe from the Department of Pediatrics and Adolescent Medicine at Rigshospitalet.
Funding
Børneriget Foundation
Novo Nordisk Foundation
Collaboration with European Children's Hospitals Organisation
Through Rigshospitalet, we are also part of the European Children's Hospitals Organisation (ECHO). ECHO works for children's health and their access to the best possible care through collaboration between children's hospitals. ECHO is a new and growing organization representing many of the leading children's hospitals across Europe. These hospitals care for some of the most complex patients in Europe and around the world, allowing them to contribute to solutions for some of the healthcare system's biggest challenges. To achieve its goals, ECHO builds relationships and collaborates with a wide range of stakeholders, including hospital administrators and staff, public health policymakers, health organizations, and patient associations.
Projects
The projects we initiate or collaborate on can, for example, involve register-based epidemiological research, data analysis, or the optimization of data from clinical trials on children, adolescents, and pregnant women. We are currently involved in several projects, including:
Transition from Pediatric to Adult Care
Transition is a prioritized initiative at the Juliane Marie Centre and part of Rigshospitalet's convention for children, adolescents, and pregnant women, which will be continued at Mary Elizabeth’s Hospital when it opens in 2026. The project aims to develop systematic transition pathways for adolescents aged 12-17 with chronic illnesses. The project seeks to ensure a smooth transition to adult care and support autonomy and self-care. To plan these pathways, we need valid data on the number of adolescents who should be offered transition programs and which adult departments will take over the patients. The center will create this data foundation by using Danish registry data to estimate the prevalence of chronic illnesses among adolescents in Danish hospitals.
Children with Heart Conditions
For children with congenital heart diseases, several projects are underway, including:
Survival Analysis after Heart Transplantation in Children
Heart transplantation is life-saving for children with end-stage heart failure. The center is conducting a systematic review of research in this area and contributing new results from Danish data.
National Database for Pediatric Heart Surgery
The center is assisting in establishing and describing a national database that links clinical data for pediatric heart surgery, potentially improving the quality of treatment.
Effect Research
Mary Elizabeth’s Hospital will serve as a test hospital for the Center for Data and Effect Research. Mary Elizabeth’s Hospital is Rigshospitalet's new facility that will bring together children, adolescents, pregnant women, and their families in one building. The building will be completed in 2026. Mary Elizabeth’s Hospital will be a "test hospital" for the solutions developed and implemented as a result of the center's analyses, research, and collaboration with stakeholders in the field. A completely new hospital building provides a unique opportunity to measure the effects of the work conducted inside the building and compare it with previous years' data at Rigshospitalet and other highly specialized hospitals in Denmark. We are currently working on establishing a study based on anonymized data about children, adolescents, and pregnant women who have had contact with Rigshospitalet from 2000 to 2022. This data will be linked through registries with information, for example, on how the children have subsequently performed in school or what the experience has meant for the parents' employment.
Other Projects and Tasks
In addition to our larger projects, we are also working on:
Reporting based on registry data
Increasing data accessibility and understanding
Providing data assistance and statistical support to clinicians