What we do
About our project
NESTOR & ERN-GENTURIS: Dutch and European Registries to Advance Hereditary Cancer Prevention and Research
In the Netherlands, an estimated 300,000 people carry a hereditary predisposition to cancer due to a variant in a cancer-related gene. Yet for most of these individuals, we lack detailed knowledge about their specific cancer risks, optimal treatment strategies, and preventive options. This is largely due to fragmented and difficult-to-access clinical and genetic data.
To address this challenge, the eight Dutch clinical genetic centers have launched NESTOR—the NEtherlandS genetic TumOr Risk registry. NESTOR is a national research infrastructure designed to unlock and structure essential data on individuals with a genetic tumor risk syndrome (GENTURIS), enabling better research, earlier diagnosis, and more personalized care. NESTOR is closely connected to the ERN-GENTURIS registry, the European registry for patients with genetic tumor risk syndromes. The GENTURIS registry is a web-based platform affiliated with the European Reference Network for Genetic Tumour Risk Syndromes (ERN GENTURIS). It facilitates standardized data registration and sharing across Europe to improve diagnostics, treatment, and disease prevention.
NESTOR is a sustainable, secure, and user-friendly digital platform that brings together clinical and genetic data from all Dutch academic clinical genetic centers. It includes a central data registry for individuals with a GENTURIS, portals for patients, healthcare professionals, and researchers and tools for data sharing, analysis, and collaboration. By organizing and connecting this clinical and genetic data, NESTOR supports research that leads to improved prevention, diagnosis, and treatment of hereditary cancers.
Comparable, the GENTURIS registry aims to provide a sustainable and interoperable platform for standardized data collection, enable data sharing among healthcare providers across Europe, to serve as a unique source of data on patients with a GENTURIS or those highly suspected of having one, to support European research from basic science to clinical trials and to accelerate the generation of new knowledge through collaborative research.
In the Netherlands, an estimated 300,000 people carry a hereditary predisposition to cancer due to a variant in a cancer-related gene. Yet for most of these individuals, we lack detailed knowledge about their specific cancer risks, optimal treatment strategies, and preventive options. This is largely due to fragmented and difficult-to-access clinical and genetic data.
To address this challenge, the eight Dutch clinical genetic centers have launched NESTOR—the NEtherlandS genetic TumOr Risk registry. NESTOR is a national research infrastructure designed to unlock and structure essential data on individuals with a genetic tumor risk syndrome (GENTURIS), enabling better research, earlier diagnosis, and more personalized care. NESTOR is closely connected to the ERN-GENTURIS registry, the European registry for patients with genetic tumor risk syndromes. The GENTURIS registry is a web-based platform affiliated with the European Reference Network for Genetic Tumour Risk Syndromes (ERN GENTURIS). It facilitates standardized data registration and sharing across Europe to improve diagnostics, treatment, and disease prevention.
NESTOR is a sustainable, secure, and user-friendly digital platform that brings together clinical and genetic data from all Dutch academic clinical genetic centers. It includes a central data registry for individuals with a GENTURIS, portals for patients, healthcare professionals, and researchers and tools for data sharing, analysis, and collaboration. By organizing and connecting this clinical and genetic data, NESTOR supports research that leads to improved prevention, diagnosis, and treatment of hereditary cancers.
Comparable, the GENTURIS registry aims to provide a sustainable and interoperable platform for standardized data collection, enable data sharing among healthcare providers across Europe, to serve as a unique source of data on patients with a GENTURIS or those highly suspected of having one, to support European research from basic science to clinical trials and to accelerate the generation of new knowledge through collaborative research.
Our research focus
These initiatives focuses on developing a robust ICT infrastructure with dedicated patient and medical professional portals, defining governance and data access policies, establishing legal, financial, and logistical frameworks for data use and engaging patients, professionals, and researchers to ensure usability and adoption. Each academic center builds an ICT platform and to be able to initiate data entry at their center, enabling semi-automated data exchange with the central infrastructure,
A multidisciplinary team of clinical and laboratory geneticists, data scientists, and IT experts is leading the project in collaboration with partners such as FORCE, Health-RI, IKNL, patient organizations, and oncology specialists. By linking NESTOR to the GENTURIS registry, Dutch data can contribute to and benefit from European-wide studies, ensuring that patients in the Netherlands are part of a broader international effort to improve care and outcomes. NESTOR and ERN-GENTURIS will address the current fragmentation of hereditary cancer data in the Netherlands and Europe by improving access to high-quality clinical and genetic data. These registries strengthen Dutch and European infrastructures that will drive innovation, collaboration, and better outcomes for individuals with hereditary cancer risk and improve the lives of those affected.]
A multidisciplinary team of clinical and laboratory geneticists, data scientists, and IT experts is leading the project in collaboration with partners such as FORCE, Health-RI, IKNL, patient organizations, and oncology specialists. By linking NESTOR to the GENTURIS registry, Dutch data can contribute to and benefit from European-wide studies, ensuring that patients in the Netherlands are part of a broader international effort to improve care and outcomes. NESTOR and ERN-GENTURIS will address the current fragmentation of hereditary cancer data in the Netherlands and Europe by improving access to high-quality clinical and genetic data. These registries strengthen Dutch and European infrastructures that will drive innovation, collaboration, and better outcomes for individuals with hereditary cancer risk and improve the lives of those affected.]
Funds & Grants
KWF: Building the infrastructure for The Netherlands Genetic Tumour Risk Registry (NESTOR) to accelerate research on hereditary cancer
Collaborations
Erasmus MC Cancer Institute
Erasmus MC Rare Disease Center
Erasmus MC Center for Familial and Hereditary cancer
Erasmus MC Rare Disease Center
Erasmus MC Center for Familial and Hereditary cancer
Radboud University Medical Center
Amsterdam UMC
Leiden University Medical Center
The Netherlands Cancer Institute
University Medical Center Groningen
UMC Utrecht
Maastricht UMC
Our team
Anja Wager, MD, PhD, Clinical Geneticist
Erwin Brosens, PhD Molecular Geneticist
Barbara van Paassen, MD, PhD, Clinical Geneticist
Marieke van Dooren, MD, PhD, Clinical Geneticist
Rick van Minkelen, PhD, Laboratory Specialist Clinical Genetics
Frank Magielsen, Ing, Database Administrator
Sandra van der Sluis – de Heer, Database Manager
Walter Voogt, Ing, Database Manager
Conny van der Meer, Clinical Nurse Specialist
Daniël Hoekman, MD, PhD, Clinical Geneticist
Daniëlle Bosch, MD, PhD, Clinical Geneticist
Judith Prins – Cornelisse, Clinical Nurse Specialist
Margreethe van Vliet, consultant clinical genetics
Margriet Collee, MD, PhD, Clinical Geneticist
Miriam van der Aa, Clinical Nurse Specialist
Paul Gundlach, Clinical Nurse Specialist
Tanja Nuiten, Clinical Nurse Specialist
Tessa van Dijk, MD, PhD, Clinical Geneticist
Yvette van Ierland, MD, PhD, Clinical Geneticist
Erwin Brosens, PhD Molecular Geneticist
Barbara van Paassen, MD, PhD, Clinical Geneticist
Marieke van Dooren, MD, PhD, Clinical Geneticist
Rick van Minkelen, PhD, Laboratory Specialist Clinical Genetics
Frank Magielsen, Ing, Database Administrator
Sandra van der Sluis – de Heer, Database Manager
Walter Voogt, Ing, Database Manager
Conny van der Meer, Clinical Nurse Specialist
Daniël Hoekman, MD, PhD, Clinical Geneticist
Daniëlle Bosch, MD, PhD, Clinical Geneticist
Judith Prins – Cornelisse, Clinical Nurse Specialist
Margreethe van Vliet, consultant clinical genetics
Margriet Collee, MD, PhD, Clinical Geneticist
Miriam van der Aa, Clinical Nurse Specialist
Paul Gundlach, Clinical Nurse Specialist
Tanja Nuiten, Clinical Nurse Specialist
Tessa van Dijk, MD, PhD, Clinical Geneticist
Yvette van Ierland, MD, PhD, Clinical Geneticist
