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Demonstrator portfolio
Een Demonstrator is een project dat de FAIR principes met succes heeft geïmplementeerd. FAIR staat voor Findable (vindbaar), Accessible (toegankelijk), Interoperable (interoperabel) and Reusable (herbruikbaar). Deze projecten tonen aan dat data FAIR maken toegevoegde waarde heeft. Door hun ervaringen te delen vormen deze projecten een inspiratie- en informatiebron voor anderen. De demonstrators zijn gekoppeld aan Data champions: professionals die graag hun kennis over FAIR delen om anderen verder te helpen.
Uit de ervaringen met FAIR in de demonstrator projecten zullen beproefde methodes naar voren komen die tot nieuwe activiteiten van het Health-RI FAIR data implementatie (DI) team zullen leiden. Lees meer over de FAIR principes en de activiteiten op het gebied van FAIR binnen Health-RI op de FAIR Data pagina.
Ben jij werkzaam binnen een potentieel demonstrator project of ken je een project dat in onze portfolio opgenomen zou moeten worden, registreer het project dan via dit formulier.
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Duchenne Data Platform (DDP)
Key facts:
- Rare Diseases Domain
- Patient Clinical Data
- Patient Reported Outcomes
- Data Access Restricted
- First sustainable patient-empowered FAIR registry
- Custom-designed Extract, Transform and Load pipeline
- Open source ‘FAIR-in-a-Box’ solution -
Vascular Anomalies Registry (VASCA)
Key facts:
- De novo FAIRification
- Real Time FAIRification upon data collection
- FAIRification at the source installed in electronic data capture system
- Data collected and controlled locally
- Local data from all centers can be queried in real time -
CovidPredict
Key facts:
- largest high granular covid database of admitted patients in the Netherlands
- ongoing inclusions and scientific projects
- ongoing scientific output
- societal impact in many national newspapers -
X-omics
Key facts
- A National Roadmap Large-Scale Research Infrastructure
- Multi-omics data analysis integration & stewardship
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The YOUth Cohort Study
Key facts
- YOUth has been awarded the Dutch Data Prize at the FAIR Data Day 2022
- More than 4000 children from the general population and their parents participate in YOUth
- Data are of high quality: rigorous measurements protocols and data quality control -
Radboud Biobank
Key facts
- Wide range of sample types collected: body fluids (e.g. DNA, plasma, serum, urine, cerebrospinal fluid and PBMC) and fresh frozen and Formalin-Fixed Paraffin-Embedded (FFPE) tissue.
- Sample handling and storage following ISO standard 20387 for biobanking to guarantee samples of high and reproducible quality.
- Extensive (meta)data for the samples
- Associated clinical data for the samples (e.g. patient, disease-specific and phenotypic data).
- Supporting researchers with the collection of correct and complete (meta)data according to internationally agreed data standards.
- Assisting researchers with legal and ethical issues related to biobanking according to national and international legislation and codes of conduct. -
The MLD initiative
Key facts
- International multi-purpose disease registry for metachromatic leukodystrophy
- Ultrarare disease
- Clinical- and patient/parent/partner-reported data
- Castor EDC
- Part of program 'Managing patient registries for Expensive Drugs' from Dutch Healthcare Institute
- Semantic model to improve interoperability with (future) other databases -
The Netherlands ME/CFS Cohort and Biobank
Key facts
- Myalgic encephalomyelitis/chronic fatigue syndrome
- Post-ACUTE Infectious Syndromes (PAIS)
- Post-COVID
- Post-acute Lyme Disease
- Post-acute Q fever
- Patient reported outcomes
- Biobank and cohort data
- Involvement of patient organizations
- FAIR-compliant research data infrastructure for ME/CFS and post-COVID
This webpage was last updated on July 22, 2024.