NL-4C
The Dutch Comprehensive Childhood Cancer Commons
Childhood cancer is one of the leading causes of death among children and those that survive, often experience lifelong effects on their quality of life. To change this, we need a holistic data resource that captures all aspects of childhood cancer. With “NL-4C: The Dutch Comprehensive Childhood Cancer Commons”, we will collect DNA, liquid biopsies, immune profiling, histopathological, medical imaging, clinical, follow-up and quality of life data for 8,000 childhood cancers. NL-4C will act as a crucial accelerator for childhood cancer research and in the future result in more cure, less side effects and improved quality of life.
Infrastructure and User Services
The main goal of NL-4C is to provide a coherent and easily accessible, comprehensive
pediatric cancer data resource and compute environment. The NL-4C infrastructure envisaged here, consists of four major components. First, a data catalogue that provides an overview of all (meta)data available within NL-4C. This pertains to samples and data collected before, during and after treatment such as primary tumor biopsies, liquid biopsies, follow-up visits and questionnaires. This will allow for a virtual reconstruction of an individual’s journey from first diagnosis during childhood to long-term effects during adulthood. Second, a data lakehouse containing all high complexity, high dimensional, multi-modal data including genomics, transcriptomics, immune profiling, whole slide imaging (histopathology), medical imaging (MRI, CT scans), quality of life and late effects will be developed. This will allow cross-individual, cross-datatype queries to assess correlations and patterns that can be used for instance to build predictive AI models. Third, a graphical data access portal that brings together both the data catalogue and data lakehouse for intuitive exploration and in-depth analyses of the available data. Fourth, a cloud-enabled computing environment, allowing users to bring and/or develop their algorithms and deploy these on the data provided. Following EHDS developments, NL-4C will align with these to establish an effective infrastructure, well connected with other European pediatric cancer data nodes. Services also include general support and training such that this facilitates scientific discoveries while using the infrastructure in an efficient and responsible manner.
Examples/description of the type of research
NL-4C will facilitate a wide-range of research areas. First, fundamental biomedical research aimed at understanding tumor initiation and progression for pediatric cancers and how this relates to clinical outcome. Basic, fundamental biological knowledge of pediatric cancer is crucial to develop better targeted treatments with less side-effects. Second, translational research aimed at identifying (imaging) biomarkers that aid tumor identification, diagnosis, tumor stratification or are predictive of treatment response. Third, clinical research that intends to develop or validate predictive models using real-world data. Fourth, computational and data scientists interested in developing or validating computational algorithms targeting rare populations or diseases. Federation with other research infrastructures such as the Dutch Cancer Registry and ITCC ped can, will also allow for epidemiological research, environmental research and development of federated learning models. Industry users would greatly benefit of having NL-4C as a real-world data resource for feasibility assessments, develop or validate new products and for regulatory purposes. Having access to a unique and comprehensive collection of pediatric cancer data from a population perspective is crucial for all these types of research. NL-4C is therefore pivotal by providing a unique and unbiased, nation-wide data collection of 8,000 pediatric cancer cases through a single-entry point and complemented by a cloud computing environment.
How to access the infrastructure?
Access is based on a three-tiered access system. Overall summary statistics such as patient numbers, division among cancer types and data available will be visible publicly. The second level requires user registration and authentication through organizational credentials, unlocking more detailed information. The third level pertains to more privacy sensitive data and requires approval of a data access committee. For some industrial usages, a fee-for-service is anticipated and will be developed.