The Norwegian childhood cancer biobank

Abstract

Background: The rapidly expanding era of "omics" research is highly dependent on the availability of quality-proven biological material, especially for rare conditions such as pediatric malignancies. Professional biobanks provide such material, focusing on standardized collection and handling procedures, distinctive quality measurements, traceability of storage conditions, and accessibility. For pediatric malignancies, traditional tumor biobanking is challenging due to the rareness and limited amount of tissue and blood samples. The higher molecular heterogeneity, lower mutation rates, and unique genomic landscapes, however, renders biobanking of this tissue even more crucial.

Aim: The aim of this study was to test and establish methods for a prospective and centralized biobank for infants, children, and adolescents up to 18 years of age diagnosed with cancer in Norway.

Methods: Obtain judicial and ethical approvals and administration through a consortium, steering committee, and advisory board. Develop pipelines including SOPs for all aspects in the biobank process, including collection, processing and storing of samples and data, as well of quality controlling, safeguarding, distributing, and transport.

Results: The childhood cancer biobanking started at Oslo University Hospital in March 2017 and was from 2019 run as a national Norwegian Childhood Cancer Biobank. Informed consent and biological samples are collected regionally and stored centrally. Approximately 12 000 samples from 510 patients and have been included by January 1, 2021, representing a 96% consent and participation rate among our newly diagnosed patients.

Conclusion: A well-functioning nationwide collection and centralized biobank with standardized procedures and national storage for pediatric malignancies has been established with a high acceptance among families.

Keywords: biobank; cancer; pediatric tumors; prospective; tissue collection.

FIGURE 1

Structure of the Norwegian Childhood Cancer Biobank. The Norwegian Childhood Cancer Biobank is anchored in a national consortium and based on an agreement between the hospitals. Each consortium participant is responsible to legal set of agreements regarding joint ownership and use of biological material and data in the biobank. Oslo University Hospital is the responsible institution with the main juridical liability. Each university hospital has representatives in the steering committee, which is committed to follow the consortium statues and review application for use of samples and data from the biobank. In addition, it is established an advisory board, which gives their professional assessments and advice regarding research projects. The advisory board is composed of experienced researchers within the childhood cancer field and a user representative. The participants are invited by the steering committee to participate for 4 years, and the composition of the group aims to be a mix of basal medicine and clinical knowledge

FIGURE 2

Norwegian Childhood Cancer Biobank work flow. Consent, inclusion, and sample collection according to Table 2 are performed at all four region hospitals. All samples are transported to the central lab at OUH for electronical registration and further processing. The samples are either stored at longtime storage or sent directly to research projects. *Surplus material are transported back to NCCB for reuse in research. Created with BioRender.com

FIGURE 3

Diagnostic distribution of patients in the Norwegian Childhood Cancer Biobank. All included cancer diagnoses in NCBB are categorized into solid tumors, central nerve system (CNS) tumors, or leukemia, while nonmalignant diagnoses are placed in the category “other.” More information about the content of the different parts is listed in Table 3