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 centerNetherlands (the)
Data provider, Data access provider
Additional organisations
- Amsterdam UMCNetherlands (the)
Data provider, Data access provider
- Erasmus Medical CenterNetherlands (the)
Data provider, Data access provider
- Leiden University Medical CenterNetherlands (the)
Data provider, Data access provider
- Maastricht UMC+Netherlands (the)
Data provider, Data access provider
- Netherlands Cancer Institute - Antoni van LeeuwenhoekNetherlands (the)
Data provider, Data access provider
- UMC UtrechtNetherlands (the)
Data provider, Data access provider
- University Medical Center GroningenNetherlands (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