Feb 15^th was International Childhood Cancer Day. To shine a spotlight on paediatric cancer research, we invite you on a biobank journey across Europe.

We will visit seven BBMRI-ERIC biobanks that work towards the shared goal to provide better treatments and care for children of all age with cancer. Our journey will take us to Sweden, Latvia, the Netherlands, Germany, Hungary, and a global organisation (IARC/WHO) to highlight different aspects of excellent paediatric cancer research.

Biobanks are vital in paediatric oncology by building, sustaining and sharing repositories of biological samples for research. These samples help us better understand cancer biology, develop new treatments, and improve diagnostic methods.

The UN Rights of the Child states:
“Children have the right to the enjoyment of the highest attainable standard of health and facilities for the treatment of illness and rehabilitation of health.”

In the age of Personalised Medicine, this includes recognising that children have different medical needs when it comes to cancer treatment. Here, specialised paediatric sample and data collections are invaluable resources for the development of the best possible treatment and care for children with cancer. 🎗️🧡

BBMRI-ERIC paediatric biobank case study 1: The Swedish Childhood Tumor Biobank (Barntumörbanken, BTB)

In Sweden, approx. 350 children are diagnosed with cancer every year. Today more than 85% of the patients will survive, but cancer is still one of the major medical causes of childhood death. Survivors can suffer from chronic health problems throughout their lives. We therefore need deeper, more detailed biological knowledge of cancer development in children to increase survival and improve their quality of life.  

The Swedish Childhood Tumor Biobank (Barntumörbanken, BTB) collects tissue samples and genomic data from paediatric patients diagnosed with central nervous system (CNS) and other solid tumours. Essential prerequisites for the responsible use of these samples for research is that donors give their informed consent and that the samples are stored safely for years to come. Regarding regulatory, logistical and organisational issues, the BTB is supported by the Biobank Sweden (Biobank Sverige) and their regional biobank Stockholm Medical Biobank. The work at the BTB is financially supported by the Swedish Childhood Cancer Fund.

In the BTB, more than 2,400 cases are registered with approximately 60,000 samples. Thousands of these cases have already been characterised via whole-genome sequencing (WGS) or whole-transcriptome sequencing (WTS). The samples and associated data provided to the scientific community by the BTB represent invaluable and precious resources for cancer research. With these samples, researchers can increase our knowledge of the biology, diagnosis, and treatment of childhood cancers.

To date, these samples and data at the BTB have supported more than 20 different research projects and BTB is assisting several clinical studies with sample logistics, regulatory support and data analysis/interpretation. The more we learn about the behaviour of tumours, we can identify more risk factors early on and develop prevention strategies.  

Resources for researchers/ patients/citizens:

The BTB:
https://www.barntumorbanken.se/ 
Swedish technologies supporting cancer research: https://www.scilifelab.se/ 
Biobank Sweden, a national infrastructure for biobanking and the Swedish node of BBMRI-ERIC: 
https://biobanksverige.se/en/a-national-infrastructure-for-biobanking/
Swedish Childhood Cancer Fund: https://www.barncancerfonden.se/en/

Image: Lab samples in the BTB (blood and tumor sample on dry ice). © Swedish Childhood Tumor Bank 

BBMRI-ERIC paediatric biobank case study 3: The Biobank at the Princess Maxima Center for Pediatric Oncology 

The Biobank at the Princess Máxima Center for Pedriatic Oncology in Utrecht stores samples of children treated at the Center. Over 5,000 (former) patients have given their permission to store tissue and data in the biobank and by this means directly support cancer research. The Princess Maxima Center brings together cancer research, biobanking and clinical treatment in one place to enable the best possible support for children with cancer.

After taking samples for routine diagnostics, parts of the sample material can be stored for future research provided that informed consent for its use has been given by the patient. These biomaterials (tissue, blood, bone marrow, etc.) and isolated DNA/RNA together with genetic, and imaging data, are stored and curated in the central Máxima Biobank together with associated medical data, including questionnaires about the quality of life. 

With this wealth of information, researchers can link the biology of the tumour to how well a certain treatment works or predict which children will be at higher risk of fatigue. Research with these samples thus directly helps to evolve treatment plans and improve the quality of life for the young patients.

A very recent example of how biobank samples at the Princess Máxima Center drive cancer research, was published 2024 in Nature Communications. In this study, researchers used patient-derived tumour organoids (“mini-tumours”, formed by in vitro cultured clusters of tumour cells derived from isolated samples) to screen for novel drugs to treat malignant liver tumours. Currently, treatment of these tumours combines chemotherapy with surgery and often includes a liver transplant which makes live-long immune suppression necessary for the children. Alternative and more personalised treatments could reduce or avoid these harsh interventions for young patients.  

Resources for researchers/ patients/citizens:

Princess Maxima Center: https://research.prinsesmaximacentrum.nl/en/core-facilities/biobank
More info on the cited study on "Liver tumor organoids point to potential treatment": https://research.prinsesmaximacentrum.nl/en/news-events/news/liver-tumor-organoids-point-to-potential-treatment

Image:
Biobanking staff at the Princess Máxima Center working with samples stored in liquid nitrogen. © Princess Máxima Center for pediatric oncology

BBMRI-ERIC paediatric biobank case study 5: The Augsburg Central Biobank (ACBB) 

Biobanks are often linked to clinics or university clinics as this allows tight coordination between taking and managing samples as well as providing care for patients and doing research. Since 2019, the Augsburg Central Biobank (ACBB) has stored 147 paediatric cancer samples. Every patient is different and has different genetic predispositions, health status or microbiome composition. Thus, every single sample helps to represent this diversity in research. Integrating these individual characteristics of a patient not only helps to find the best possible treatment strategy for this individual person but increases our ability and knowledge to apply personalised treatment strategies for all patients via Personalised Medicine. 

The ACBB processes tumour tissue samples from minors and stores them as fresh frozen samples at temperatures below -150°C. These low temperatures are essential to preserve the integrity of these samples for many years. Collecting and storing these samples is thus a direct investment in cancer research for decades to come. If possible, the ACBB also stores tissue samples from healthy patients as those are strongly needed as references for research projects. 

In its early phase, the ACBB collected cryo-preserved tissue samples including solid tumours of the lung or colon, but the spectrum of collected cancer and sample types is constantly increasing in tight coordination with the clinicians. Now, the ACBB also collects liquid samples (e.g., blood plasma, serum, urine), isolated DNA or mononuclear cells. This includes samples that are taken routinely for example for diagnostic purposes but also samples that are collected in dedicated studies. 

The ACBB also stores paediatric samples from patients with Rhabdoid tumours (e.g. blood and tissue samples) for the European Rhabdoid Registry. By participating in trans-national projects, infrastructures like BBMRI-ERIC and sample/data sharing initiatives, also smaller collections stored in local biobanks support research across the continent. This multiplies the impact these samples can have for research and thus for patients. 

Resources for researchers/ patients/citizens:

ACBB:
https://www.uk-augsburg.de/einrichtungen/institute/institut-fuer-pathologie-und-molekulare-diagnostik/biobank/ueberblick
European Rhabdoid Registry: https://www.gpoh.de/kinderkrebsinfo/content/fachinformationen/studienportal/onkologische_studien_und_register/eu_rhab_register/index_ger.html

Images:
ACBB Biobank staff preparing samples for analysis. © ACBB
ACBB Biobank staff taking samples put of a -80°C freezer. © ACBB

BBMRI-ERIC biobank case study 7: The Hungarian Sample Collection of Pediatric Diseases (SCOPEDIS)

As early as 1971, the Hungarian Pediatric Oncology Network started a national registration system for all children diagnosed with haematological and solid tumours. To support this, the Hungarian Childhood Cancer Registry was founded to collect and store structured patient data for research.  

In 2022, the SCOPEDIS (Sample Collection of Pediatric Diseases) Biobank project started. Its aim was to set up a quality-assured infrastructure for the systematic collection, processing, storage, and open distribution of samples and associated data across the networks’ eight treatment centres in Hungary. 

So far, approximately 900 samples and detailed associated datasets have been collected from paediatric cancer patients. The samples and pseudonymised data are obtained at each collection centre from all children diagnosed with malignancies or pre-malignant tumours. The SCOPEDIS Biobank manages a diverse range of samples, including blood, bone-marrow aspirates, and solid tumour tissue, all accompanied by pre-analytical and clinical information.

As prerequisite for using the samples for research, the biobank staff thoroughly documents and monitors storage conditions and aims to assess the quality of the samples before distribution via e.g., DNA/RNA, total proteome quantification, or tissue integrity analysis. To uphold the highest quality standards for these precious samples, the SCOPEDIS Biobank adheres to the requirements of ISO 20387 norm and international best-practice guidelines.

A biobank cannot support research unless there are patients willing to give their samples and the informed consent to use them. To strengthen the bond between the research community and participating patients and families, the network has set up a dedicated website.

This website provides transparent information about processes like sample and data access and serves as a communication platform for participants and researchers. This is a prime example of an outreach initiative to raise public awareness and understanding for the need and social benefit of modern biobanking for research.  

Resources for researchers/ patients/citizens:

The SCOPEDIS website:
www.biobank.org.hu
The Hungarian Pediatric Oncology Network: https://www.bbmri.hu/biobanks/hungarian-pediatric-oncology-network-scopedis-biobank/

Images: A low-temperature freezer with colour-coded biobank samples at the SCOPEDIS. © SCOPEDIS
A small storage/freezing box for barcoded sample tubes. © SCOPEDIS