The fight against childhood diseases, including cancer, is vital for safeguarding the future of our society. Advances in digital infrastructure and biodata resources have significantly improved health outcomes for children, with five-year childhood cancer survival rates rising from 60% in 1970 to over 85% by 2020.
Initiatives like the Childhood Cancer Data Initiative (CCDI) have made vital contributions. CCDI connects researchers and medical professionals with a vast range of paediatric oncology data, fostering collaboration and advancing therapies. The Childhood Cancer Data Catalog, a key part of CCDI, provides access to resources such as the Childhood Cancer Model Atlas (CCMA) and the Automated Childhood Cancer Information System (ACCIS). Additionally, over 50% of children with cancer participate in clinical trials through cooperative groups like the Children’s Oncology Group (COG), compared to just 5% of adult patients. This high level of participation, combined with consistent data sharing, has accelerated progress in paediatric cancer treatments.
Another impactful resource is the Atlas of Variant Effects Alliance (AVE), which maps the impact of genetic variants on functional elements in the genome. This information helps researchers and clinicians develop precision therapies that target specific tumour mutations, offering personalised treatment options for cancer patients.
In the realm of drug safety, the Safety and Toxicity of Excipients for Paediatrics (STEP) database, provides critical information about non-active ingredients in paediatric medicines. STEP has become a global resource, with users including major pharmaceutical companies like Pfizer, Roche, and GSK. Proveca, a pharmaceutical company, used STEP to screen excipients, saving £1 million and 12 months of development time, which contributed to the approval of Sialanar, a treatment for severe drooling.
These examples highlight the transformative power of biodata resources in improving paediatric healthcare. As the complexity of treatments and data grows, continued investment in digital infrastructure and collaboration will be crucial in advancing data-driven innovations for children’s health.