Recall studies

FinnGen is based on utilising genome data (genetic data) generated from biobank samples and health-related data from social and healthcare registers. However, not all information that is relevant to health research is available through these sources and therefore FinnGen has invited a small subset of the participants to provide new samples or more health-related information.

Read more about the recall studies that have been performed during FinnGen:


A questionnaire study pilot

In 2021, FinnGen invited 6000 participants to take part in new research areas. In these research areas, issues related to the different aspects of life were examined in more detail. These included a health and well-being survey and a collection of functional tests. Both sets of information were submitted through the MyBiobank online portal.

The aim of this pilot study was to understand what kind of lifestyle factors, personal features and preferences together with genetic factors affect the risk of becoming ill and the progression of possible diseases.

This was the first time FinnGen invited participants to provide information. All invitees were over 18 years of age and lived in Finland. The FinnGen study already contained the genomic and health information of each invited person, and each invited person had authorised their biobank to contact them in their Biobank Consent. The invitations were sent by the biobanks. Of the invitees, 1115 completed the study questionnaires.

More information on this substudy is available in the Participant Bulletin and the consent form.

A substudy on Alzheimer’s disease

The first FinnGen sub-project that invited participants for further clinical examinations took place in Eastern Finland during 2021-2022. The project explored methods that might be suitable for investigating the progression of Alzheimer's disease and other, less severe memory disorders. This substudy aimed to improve early diagnostics of Alzheimer's disease and to increase understanding of its pathogenesis.

In the initial phase, 140 patients with Alzheimer's disease or another, less severe memory disorder were invited to participate from the sample donors of the Biobank of Eastern Finland. Of these, 27 participants completed the study.

A larger multi-center study (TWINGEN) was launched in 2023 and by the end of the year, 950 study subjects were recruited, of which approximately 700 completed the tests.