Arrow Left Dutch COVID-19 Data Support Programme

National COVID-19 citizen control registry 

Providing a legal framework for data and sample collection. It is crucial that citizens can make a well-informed decision to consent or object to the use of their data and samples for COVID-19 studies and that their decision is registered and can be checked. 

Health-RI and the NFU aim to develop a harmonized national COVID-19 citizen control registry. This will be done in close collaboration with all relevant stakeholders such as patients, researchers, caregivers, health professionals and the government. The national registry aims to avoid local and fragmented efforts to seek consent or provide an option to opt-out.

The National COVID-19 citizen control registry would have three components: 

  1. A web-based register for citizens to consent and/or object to the use of their healthcare data and samples for COVID-19 studies. 
  2. A webservice for researchers and caregivers enabling them to check whether their proposed participants have consented or opposed the use of their data.  
  3. Public communication on a national and local level to inform citizens about the use of their health data and tissues for research purposes and the possibility to consent/oppose to that. 
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