NESTOR

NEtherlandS genetic TumOr Risk Registry...

Description

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...

General Design

Type
Disease specific, Rare disease, Registry
Cohort type
Clinical cohort
Data collection type
Retrospective, Prospective
Design
Longitudinal
Design description
Patients with genetic tumour risk syndromes 
Start/End data collection
2025 (ongoing)

Population

Countries
Netherlands (the)
Number of participants with samples
0
Population age groups
All ages
Inclusion criteria
Hospital patient inclusion criterion
Other inclusion criteria
Patients with genetic tumour risk syndromes (genturis)

Organisations

Lead organisations
  • Radboud university medical center 
    Netherlands (the)

    Data provider, Data access provider

Additional organisations
  • Amsterdam UMC 
    Netherlands (the)

    Data provider, Data access provider

  • Erasmus Medical Center 
    Netherlands (the)

    Data provider, Data access provider

  • Leiden University Medical Center 
    Netherlands (the)

    Data provider, Data access provider

  • Maastricht UMC+ 
    Netherlands (the)

    Data provider, Data access provider

  • Netherlands Cancer Institute - Antoni van Leeuwenhoek 
    Netherlands (the)

    Data provider, Data access provider

  • UMC Utrecht 
    Netherlands (the)

    Data provider, Data access provider

  • University Medical Center Groningen 
    Netherlands (the)

    Data provider, Data access provider

Networks

Part of networks...

Access conditions

Data access conditions
disease specific research
Data use conditions
  • project specific restriction
  • institution specific restriction
Data access fee
false
Release type
Continuous
Prelinked
true