Purpose for research
Upon child and/or parent consent for biobanking, whole-genome (WGS) and RNA sequencing are performed on primary samples (tissue, blood or bone marrow) for research purposes. To support these efforts, the Maxima’s Big Data Core has developed computational analyses for sequenced material that include the detection of somatic variants, including single nucleotide variants (SNVs), insertions and deletions (indels), copy number variations (CNVs) and structural variants (SVs), in tumor samples.
In addition to harmonized data and bioinformatics pipelines, children's baseline and clinical annotations will be made available though the NL-4C data portal. The data is being made available with the goal of accelerating cancer research.
In the NL-4C data portal general population-level data, like numbers, tumor types and age, can be accessed freely. Registered users can access baseline and clinical data such as age at diagnosis, tumor stage, percentage, toxicity and treatment outcome. Raw and processed data can only be requested by researchers from organizations after approval from the Biobank and Data Access Committee (BDAC).
The Máxima Center's standard BDAC procedures are followed, including legal agreements. Importantly, the NL-4C initiative complies with data protection and privacy regulations to guarantee that patient information is safely used in the cloud and children’s rights are preserved. By making these resources available, NL-4C supports precision medicine programs aimed at providing targeted therapies for individual children.
Contact
NL-4C is initiated by the Kemmeren group and is a scientific research infrastructure project funded by the Dutch Research Council (NOW), 2023-2028.
Karina Borja (scientific project coordinator) email: k.c.borjajimenez@prinsesmaximacentrum.nl