A rare disease network is a collaborative framework that brings together healthcare professionals, researchers, patients, and other stakeholders to improve the diagnosis, treatment, and care of individuals with rare diseases. These networks aim to pool knowledge, share best practices, and coordinate efforts across institutions and countries to overcome the challenges posed by the low prevalence and high diversity of rare diseases.
Network detailsCatalogueNESTOR
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 resource for all patients with one of the rare genetic tumor risk syndromes.
General Design
- Type
- Registry
- RWD type
- Disease registry, Rare disease registry
- 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 (RUNMC)Netherlands (the)https://www.radboudumc.nl
Data provider, Data access provider
Additional organisations
- Amsterdam University Medical CentersNetherlands (the)https://www.amsterdamumc.org
Data provider, Data access provider
- Leiden University Medical Center (LUMC)Netherlands (the)https://www.lumc.nl
Data provider, Data access provider
- Maastricht University Medical Centre (AZM; MUMC)Netherlands (the)https://www.mumc.nl
Data provider, Data access provider
- The Netherlands Cancer Institute (NKI; NKI-AVL)Netherlands (the)https://www.nki.nl
Data provider, Data access provider
- University Medical Center Utrecht (UMC)Netherlands (the)https://www.umcutrecht.nl
Data provider, Data access provider
- University Medical Center Groningen (UMCG)Netherlands (the)https://www.umcg.nl
Data provider, Data access provider
Data dictionaries
Tables
Tables and their description
| Name | Description | |
|---|---|---|
No results for current selection |
Variables
Variables and their description
| Variable | Table | |
|---|---|---|
No results for current selection |
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