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Demonstrator portfolio
A Demonstrator is a project that has successfully implemented the FAIR principles. FAIR stands for Findable, Accessible, Interoperable, and Reusable. These projects demonstrate the added value of making data FAIR. By sharing their experiences, these projects serve as a source of inspiration and information for others. The demonstrators are linked to Data champions: professionals who are eager to share their knowledge about FAIR to assist others.
From the experiences gained in the demonstrator projects involving FAIR, proven methods will emerge that will lead to new activities for the Health-RI FAIR Data Implementation (DI) team. Learn more about the FAIR principles and activities related to FAIR within Health-RI on the FAIR DI team page.
If you are involved in a potential demonstrator project or know of a project that should be included in our portfolio, please register the project through this form.
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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.