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DECIDE - Development of a dynamic informed consent system for biobank and citizen science data management, quality control and integration

Project Title: DECIDE - Development of a dynamic informed consent system for biobank and citizen science data management, quality control and integration.”

Funding: European Regional Development Fund (ERDF), Measure 1.1.1.1 “Support for applied research”

Project No.: 1.1.1.1/20/A/047

Period: 1 March 2021 – 30 November 2023

Project costs: 540 540.54 EUR

Principle Investigator: Dr. biol. Vita Rovīte

Cooperation partner: SIA “KleinTech Software” 

 

Project summary:

The scientific objective of the project is to develop dynamic consenting and survey system prototype to integrate academic research conducted in biobank with citizen science initiatives maintaining data credibility via hierarchical metadata harmonization and assessing ethical, legal and social implications (ELSI).

Informed consent is the foundation of any biological sample and data-related research in biomedicine, that is used to protect the right of an informed decision of the individual whether to take or not take part in the research. The specific form of dynamic informed consent is used to ensure that an individual participating in research can modify his or her decision about the research that is conducted with his sample and data and actively follow research results that could be of importance to him or his immediate relatives. Dynamic consent concept is especially important in case if an individual has donated sample/data to the biobank

Information published 01.03.2021.

 

Progress of the project:

1 March 2021 – 31 May 2021

During this project implementation period, the definition of the hierarchical levels of metadata has been carried out for the various types of questionnaires, in order to align this system with those systems used elsewhere in Europe for the categorisation of biobanks and medical research data. Prototype programming has been started and the development of prototype classification, notification and audit modules is in progress. A prototype schematic content module has been created and plan for ethics-by-design implementation has been created for the inclusion of ethical and legal aspects in the prototype development process.

Information published 31.05.2021.

 

Progress of the project:

1 June 2021 – 31 August 2021

During this project implementation period, the definition of the hierarchical levels of metadata has been continued for the various types of questionnaires, in order to align this system with those systems used elsewhere in Europe for the categorisation of biobanks and medical research data. Prototype programming has been continued and the development of prototype classification, notification and audit modules is in progress. Detailed description of implementation of ethics-by-design principle in registration module have been developed.

Information published 31.08.2021.



Mājas lapas izstrādi finansēja ERAF 2.1.1.2. aktivitātes projekts Nr. 2010/0196/2DP/2.1.1.2.0/10/APIA/VIAA/004 "Latvijas biomedicīnas pētījumu integrācija Eiropas zinātnes telpā".