Why is the Hematological Biobank needed?

The Hematological Biobank collects blood, bone marrow, and skin biopsy samples from patients with haematological diseases, as well as related data, including information on patients' disease, treatment, and follow-up. This collection of samples and data is needed for research to develop new approaches to the prevention, diagnosis, treatment, and follow-up of serious haematological diseases, particularly leukaemia.

 

Currently, patients with leukaemia are primarily treated with high-dose cytostatic agents and stem cell transplantation. These treatments are intensive and difficult to individualise. There is a great need for improved treatments, as current approaches are not effective or tolerable for all patients.

 

Clinical drug research aims to develop more targeted, safer, and more effective treatments. One objective is personalised treatment based on genetic or protein-level abnormalities, specifically targeting malignant stem cells.

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From whom are samples and data collected?

The aim is to collect and store samples and related data from all patients with haematological diseases for research purposes.

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How are samples collected and processed?

Blood and bone marrow samples are collected at different stages of the disease (for example, diagnosis, remission, and relapse). A small skin biopsy is also taken at the time of the first sampling. Samples required for diagnosis and treatment are always prioritised, after which samples for the biobank are collected.

 

Samples are collected in accordance with the instructions of the Hematological Biobank and transferred to the Institute for Molecular Medicine Finland (FIMM) for processing. Samples are processed into a storage-ready format and stored in ultra-low-temperature freezers in the gas phase of liquid nitrogen.

 

How are sample donors informed?

Prior to sample collection, a nurse, a study nurse, or a physician reviews the information sheet and consent form with the patient and answers any questions. A healthcare professional who has provided the information obtains the signed and dated consent. Samples and data will only be collected from patients who have given their informed consent.

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Who can access the collected samples and data?

Access to samples and data is granted only for medical research that falls within the Hematological Biobank’s field of research. Access requires a written application, including a favourable opinion from an ethics committee, a study protocol, and a description of data and sample processing.

 

Furthermore, the recipient's professional and scientific competence is assessed as part of the process. Samples and data are provided in coded (pseudonymised) form to ensure donor privacy. Information on research projects using the samples and data from the Hematological Biobank is published on the biobank’s website.

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How is privacy ensured?

Data related to samples, including personal data, are handled in accordance with the strictest data protection criteria, as with any other patient data. Samples are stored with coded identifiers, and directly identifiable data are, as a rule, not disclosed for biobank research.

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Is it possible to prohibit the use of samples and data later?

A patient may withdraw consent at any time, after which their samples and data will no longer be used in any new research. However, samples and data already made available to ongoing research projects cannot be retrospectively withdrawn.