Samples for clinical studies and diagnostic purposes have been collected throughout the history of medicine. Methods for collecting samples and consent practices have varied greatly, depending on the legislation and policies of each period. The difference between traditional sample collections and the new biobank concept is that samples collected in a biobank can be used for a variety of future research needs, not just for a defined specific research purpose.
In addition to biological samples, appropriate sample and donor-related information is also collected with the donor’s permission. Information has been collected, for example, by questionnaires, during sampling, in the context of a medical examination, or during hospitalization. The data is stored in accordance with proper data processing and management practices, as defined by law.
The Finnish Hematology Registry and Clinical Biobank
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 owners of the FHRB:
The Finnish Hematology Registry and Clinical Biobank is owned by the Finnish Association of Hematology (FAH), the Finnish Red Cross Blood Service and the Institute for Molecular Medicine Finland (FIMM), which is affiliated to the University of Helsinki. The samples and data are owned and controlled by the owners of the biobank.
Hospitals providing treatment for patients with hematological disorders are involved in the operations of the biobank. A representative of the Association of Finnish Cancer Patients also participates in the planning of operations and in the work of the Steering Committee.