A summary of the Finnish Hematology Registry and Biobank (FHRB)
Biobank owners: The Finnish Association of Hematology (FAH), Institute for Molecular Medicine Finland (FIMM) and Finnish Red Cross Blood Service (FRCBS).
Clinical Centers: Finnish university hospitals and other hematological units
Analytical centers: Participating hospitals are responsible for sampling. FRCBS takes care of the sample logistics, processing and coding where as FIMM is responsible for sample storage, sample quality control policies, LIMS and sample distribution for research purposes. FAH maintains the clinical data registry.
Funding/sponsors: FAH, FIMM, FRCBS, participating hospitals, grants.
Primary Objective: Access to high-quality clinical patient material (e.g. primary cells, plasma) linked to comprehensive registry data and molecular characterization of the patient material using state-of-the-art technologies will facilitate a more rapid translation of basic research innovations into clinical care (diagnostics, imaging, therapeutics) and result in improved outcome of patients suffering from hematological diseases.
Ethics and personal data protection: FHRB is authorized by the National Supervisory Authority for Welfare and Health (Valvira) and has got a favorable opinion from the National Medical Ethics Committee. Personal data protection is managed diligently according to the informed consent.
Access to coded specimens and clinical data: The objective of FHRB is to encourage extensive and appropriate use of the resource. The intention is that the process for applying access to the samples and data be transparent, fair and unbiased, offering equal possibility to all research projects without undue delays. Read more on access policies.
Processing costs: The FHRB is a non-profit biobank and the goal is to provide a service that is accessible to all qualified researchers without imposing financial obstacles. The cost for accessing FHRB’s material depends on what is being accessed, calculated as a simple cost recovery of FHRB Biobank’s internal costs plus any third party costs incurred by FHRB. The fee will cover the costs of the application process, retrieving the samples and data from storages, assessing sample quality and distributing the samples and data to researchers.
MTA: The Material Transfer Agreement (MTA) shall be concluded between FHRB and the scientific institutes or organisations involved in the project.