Patients and guardians

Samples for the NOPHO Leukemia Biobank are taken primarily for use in childhood leukaemia research in the Nordic countries. If necessary, your sample may be used in additional investigations as part of your treatment. Permitted uses for samples stored in a biobank are care and treatment, for example if your healthcare provider needs to re-examine your sample because a treatment is not working as intended, or to make a more reliable diagnosis by comparing new samples with stored ones.

Samples in the NOPHO Leukaemia Biobank are stored indefinitely. Consent to store a sample does not guarantee that the sample will be stored. Samples may be discarded if the quality is too poor to be used. 

Samples are of great value for medical research. In order to conduct research on stored samples, the research project must always be approved by the Swedish Ethical Review Authority, which assesses whether the project is important for healthcare and whether it can be carried out without infringing on the patient’s personal privacy.

Samples for the NOPHO Leukemia Biobank are taken primarily for use in childhood leukaemia research in the Nordic countries. If necessary, your sample may be used in additional investigations as part of your treatment. Permitted uses for samples stored in a biobank are care and treatment, for example if your healthcare provider needs to re-examine your sample because a treatment is not working as intended, or to make a more reliable diagnosis by comparing new samples with stored ones.

A lot of research has already been carried out on the biobank’s samples. Read more about our publications here.

Samples are dealt with when they arrive at the laboratory to extract cells that are important for future research.

Cells are stored at extremely low temperatures (-198°C) in a special liquid nitrogen freezer. Cells can be kept alive for many years without being significantly affected.

DNA and RNA (biomolecules) are extracted from cells and aliquoted based on the amount of biomolecule obtained from the extraction. The tubes are frozen at -80°C.

There are approximately 30,000 test tubes containing frozen cells in the biobank’s sample collection.

Serum is divided into 1–4 tubes of approximately 1 ml and frozen at -80°C. There are around 4,600 serum tubes in our freezers.
Cerebrospinal fluid is divided into 1–2 tubes and frozen at -80°C. There are about 500 tubes containing cerebrospinal fluid.

The freezer location (freezer/shelf/box/position) is recorded in the FreezerPro lab data system, and here Sofia can be seen sorting tubes according to the given position.

Only researchers with an approved ethical and NOPHO application who want to request a sample release from the biobank can obtain samples. These samples are de-identified so researchers do not have access to any personal data. There are also no links to any individual in publications or reports.

Should your sample be needed for your treatment, your treating doctor can always request a sample release.