A national biobank

Many fields of medicine are moving towards more personalized patient care, in other words attempting to find the most suitable targeted therapies and targeted medicinal products for each individual patient. The development of such therapies requires close links between sample materials, research and patient care.

The Finnish Hematology Registry and Clinical Biobank was established to support research into hematological disorders. It seeks to discover new methods for the better prevention, earlier and more accurate diagnosis, and personalized treatment and follow-up of hematological disorders.

The work of the FHRB includes:

- collecting biological sample material and related data on the patient’s disorder, treatment and follow-up
- storing the samples and data and making them available for research in the field of hematology
- safeguarding sample donors’ privacy and right to information

The samples are collected by the hospitals treating the patients and processed for storage in the laboratory of the Finnish Red Cross Blood Service. Once the samples have been collected and processed, they are transferred to the Institute for Molecular Medicine Finland (FIMM) for storage. All the samples are frozen at -70°C before being transferred to gas phase liquid nitrogen storage at -180°C.

The complete and careful collection of samples and related data is important for ensuring that the scientific research based on the biobank samples is of the highest quality. The FHRB has defined standardized procedures for the collection of material, transparent principles for the use of samples, and clear instructions for both sample donors and researchers. With the biobank’s permission, coded biobank samples and related data can be made available to researchers. Research permits are awarded by the FHRB Steering Committee on the basis of an evaluation performed by the Scientific Advisory Board.

A national biobank for Finland

The Finnish Hematology Registry and Clinical Biobank is active throughout Finland. Samples and data are collected from consenting patients with hematological disorders in all units in Finland that provide treatment for such disorders and have signed an agreement on the collection of samples and data. The samples are processed by the Finnish Red Cross Blood Service and stored in the sample repository of the Institute for Molecular Medicine Finland, which is located in Meilahti, Helsinki.

Biobank activities in Finland are regulated by the Biobank Act (688/2012), which entered into force on 1 September 2013. This Act provides a framework for the utilization of human biological samples in medical research while securing the rights of the sample donors. The Biobank Act also enables the utilization of samples in future studies that have not yet been planned at the time of sample collection. In Finland, operations governed by the Biobank Act are directed and supervised by the National Supervisory Authority for Welfare and Health (Valvira), which is also responsible for maintaining the National Biobank Register.