NESTOR Registry

The Netherlands Genetic Tumour Risk Registry

Welcome to the NESTOR Registry

The Netherlands Genetic Tumour Risk Registry NESTOR Registry is the Dutch registry for patients with genetic tumour risk syndromes (genturis). It is associated with 8 Dutch centres participating in the KWF NESTOR project and serves as a comprehensive resource for all patients with one of the rare genetic tumour risk syndromes.

Aims of the NESTOR Registry

There are 300,000 people in the Netherlands with a high hereditary cancer risk. However, there is limited information available regarding their risk, treatment, and prevention options. Research is further hindered by the inaccessibility of genetic data.

Therefore the primary aim of the NESTOR Registry is to support research that provides valuable insights into the natural history of rare genetic tumour risk syndromes and the care pathway for affected patients. By collecting data from a large cohort of affected patients, the registry will enable regulated data access according to a defined data access policy.

The registry opens up new opportunities for research, including translational, epidemiological studies, and clinical trials, helping to accelerate the generation of critical knowledge on genetic tumour risk syndromes. Our goal is to improve the recognition, detection, counselling, and treatment of patients while reducing variations in clinical outcomes.

Key objectives include-

  • Providing a sustainable, user-friendly, and interoperable web-based platform for standardised patient data registration from participating healthcare providers (HCPs) in the KWF NESTOR project, as well as other HCPs.
  • Facilitating data sharing across the Netherlands.
  • Creating a unique, comprehensive source of data from a large number of genturis patients or those highly suspected of having genturis.
  • Enabling national research ranging from basic studies to clinical trials on genturis.
  • Accelerating collaborative research efforts to generate new knowledge on rare genetic tumour risk syndromes

Contact

For further information, please contact the NESTOR registry coordination team by email support@molgenis.org or at the following address.

University Medical Centre GroningenNESTOR registryDepartment of Medical GeneticsAntonius Deusinglaan 1, 9713 AV GroningenThe Netherlands