New Insights into childhood cancer: sharing data to transform precision medicine
In November, Children’s Cancer Institute will launch Insights, a new platform that makes data from the ZERO Childhood Cancer Program easier to discover, explore and request.
Designed by and for researchers, Insights changes the experience of finding and accessing data. Until now, the only way to know whether data could answer a research question was to apply for it. How many children carry the variant of interest? Was RNA-sequencing done? Is the data published, or still embargoed? Finding out has meant emails, applications and long waits, often weeks or months, sometimes only to learn the data won’t do the job. That’s time lost to research that could help children with cancer, and valuable data left underused.
With Insights, researchers explore first and request second, so they can spend less time chasing data and more time using it.
Ask the question, see the answer
ZERO is a world-leading precision medicine program bringing together clinicians and researchers across Australia and internationally. The ZERO dataset is a rich and rare resource for childhood cancer research: over 3,500 participants, more than 15,000 samples and over 200 patient-derived xenograft (PDX) models. Insights puts ZERO’s clinical and molecular data in one place for researchers, bioinformaticians, clinicians and molecular tumour board members.
Everyone starts in Insights the same way: searching by diagnosis, gene, variant or study, then stacking filters across cancer type, participant, sample and molecular data. Counts update live. Within minutes, a researcher can see whether a viable cohort exists, and a clinician can check how often a variant or subtype has appeared across ZERO. Bioinformaticians can create virtual cohorts in preparation for downstream analysis.
When the data looks right, one click turns the query into a data access request for FASTQ, BAM/CRAM and VCF files, expression matrices or methylation array data. The whole process is transparent: researchers can see where their request stands at every step, from review through to delivery.
Shared safely, used widely
Childhood cancers are rare, and many subtypes are rarer still. No single hospital, study or country sees enough cases to answer the questions that matter most. Progress depends on sharing data carefully and at scale, so that what we learn from one child can help the next.
The data in ZERO exists because thousands of children and their families chose to contribute to research. Insights is designed to make that contribution go as far as it can. It is open enough for researchers to find what they need, and governed closely enough to protect the trust those families have placed in the ZERO program.
Anyone can log in and explore summary-level data, including cohort counts and distributions, and researchers can sign in with their institutional credentials. Detailed and participant-level data stays behind established access processes: approval decisions are guided by participant consent, data agreements and the Institute’s legal and policy requirements. Insights holds no directly identifiable information.
Built to be reused
Insights was developed through GUARDIANS, the Australian BioCommons-coordinated national infrastructure program for secure discovery, access and analysis of human genomics data. GUARDIANS is supported by Bioplatforms Australia, enabled by NCRIS.
Insights uses an HL7 FHIR-based data model and recognised ontologies to harmonise clinical, molecular and biospecimen data. It follows FAIR principles and aligns with relevant GA4GH approaches, with carefully managed extensions where paediatric cancer data needs them. The code is planned for open-source release so others can adapt it for their own datasets.
Insights will keep growing. Over the next 18 months, funded development will expand what can be discovered, adding more biospecimen types, more molecular data (including germline findings), drug screening results and AI capabilities. If your organisation has data that could be shared through Insights, please contact the team at insights@ccia.org.au.
See Insights in action
Join Children’s Cancer Institute and Australian BioCommons for a webinar on Wednesday 25 November, 1–2 pm AEDT. We’ll show how to access Insights, discover and explore ZERO data, build and save queries, and submit a data access request from start to finish.
