Data and sample resources

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Accessing ZERO Samples
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Access to research resources

ZERO’s molecular profiling platform includes whole genome sequencing, RNA sequencing and methylation array data, and aggregate base clinical information from children with cancer of various tissue origins.

Cancer researchers with appropriate regulatory approval have the opportunity to request ZERO samples and data via an application process. Resources that may be requested include: 

• primary and patient-derived xenograft cells and tissues 
• WGS, RNAseq and methylation array data. 

Applications received are reviewed by the ZERO Data Access Committee (ZERO DAC), with an expected response time of 4-6 weeks. Patient consent to share collected samples and data is sought at the time of enrolment on the ZERO national clinical trials (PRISM and ZERO2), and all collected material is deidentified to maintain participant privacy and confidentiality.  

Please note that in certain circumstances, the material may need to be recalled for clinical use (such as to enable clinicians to enrol patients onto other trials). 

Data & Sample Access Policy

ZERO is committed to making ZERO data and samples widely available to researchers within the constraints of human ethics, patient consent and confidentiality and other legal principles governing data storage and release.

Guided by the best practice guidelines and the principles outlined by the National Health Medical Research Council (NHMRC) and the Global Alliance for Genomic and Health (GA4GH), the ZERO Data Access Committee (ZERO DAC) oversees and authorises the access to ZERO's genomic and associated data, and/or biomaterials collected and stored under the custodianship of the ZERO Program at Children’s Cancer Institute Australia. The ZERO DAC provides oversight on access requests to these resources for further research subsequent to their primary purpose approved in the ZERO Program Protocol.

All ZERO Data or Samples access requests for further research beyond the ZERO Program Protocol must be submitted to the ZERO DAC, who will verify, review and assess the feasibility of the proposal and authorise the researchers' access to the data/sample set(s) for further research use.  Approved access to resources will be subject to entry into binding terms and conditions attached to the ZERO Data and Sample access requests which reflect the scope of the applicable patient consents and ethics approvals.  This includes a legal obligation on recipient researchers and their institutions to maintain data security and confidentiality, not to seek to reidentify patients and to use the resources solely for the approved research.  

All applications received after March 15^th 2024 will be reviewed by the DAC committee.

Please note that the requirement for ZERO DAC approval for access to resources for further research applies to all researchers whether already participants in the ZERO Program as researchers or clinicians or wholly independent of the ZERO partner organisations.

Researchers requiring access to these resources are invited to submit a ZERO Data or Sample Access Application form that can be found on our web pages here. (See links under “Navigate to:”)

Please visit our updated ZERO Data & Sample Access webpages for more information or reach out to zeroDAC@ccia.org.au to enquire.

Applicant will typically be notified of the outcomes within 4 weeks of submission. In the event where additional information is requested by the DAC, more time may be required ahead of an application being approved.

To maximize the utility of the rich data within the ZERO cohorts without compromising participant privacy and confidentiality, we have deployed a controlled access data management system. This system enables sharing of de-identified, minimal clinical information, together with individual omics data either in a processed (VCF or TXT) or unprocessed (FASTQ, FASTERQ or BAM) data format, conditional to the justification provided by requesting applicants.

Completion of the ZERO Data Access Application (DAA) or the Sample Access Application (SAA) form and execution of the Data/Material Transfer Agreement is required before access to Data or Sample can be granted. The named investigator of each application will be notified in writing the outcome of their application.

Any changes to a study for which materials or data have been supplied, an Amendment Request must be submitted to reflect any substantial variations, including changes to listed or authorised personnel and the scope of data use. Alternatively, the Investigator(s) and Receiving Institution(s) may be required to sign the Schedule of Special Conditions to confirm acceptance of variations from the Application Form as submitted.

You are strongly recommended to send a preliminary enquiry to zeroDAC@ccia.org.au before submitting a completed Form so that we can assist you in determining likely sample and data availability.

At the conclusion of a five (5) year follow up period from patient enrolment on ZERO, excess tissue and nucleic acids samples from participants that have consented to future research will be made available to the Children's Cancer Institute Tissue Bank, where access should be sought.

All submitted application form(s) and all supporting documentation must be provided in English. All submissions and enquiries should be addressed to the ZERO DAC via zeroDAC@ccia.org.au.

ZERO Data Access Committee (ZERO DAC)

Access to and use of ZERO Data or Samples is possible through an application to the ZERO Data Access Committee (ZERO DAC). Applications are assessed on the merit of the application based on the following-:

1. A question has been defined;
2. The data being sought is relevant to the defined question;
3. Relevant ethics is in place to conduct the study;
4. Appropriate research governance is followed by the applicant.

The ZERO DAC may, in its absolute discretion, approve, conditionally approve, reconsider, or reject any applications. Any record of non-compliance to the Terms and Conditions stipulated within their previously executed Data/Sample access applications may impact the Applicant’s eligibility to re-apply for data access in the future.

To view the assessment criteria used to review all ZERO data/sample access applications, please click here to download the DAC review criteria template.

To view the full responsibilities and functions of the ZERO DAC, please click here to download the committee charter.

2024 Submission rounds & DAC meeting dates

Any requests to access ZERO data or samples for research or clinical use must be submitted to the ZERO DAC for review. Please see below for the application closing and DAC meeting dates. Applications are reviewed after each round closing date.

The DAC monthly review cycles do not apply to requests for ZERO Data/Samples that are justifiable for clinical purpose related to the ZERO2 trial or other clinical studies/trials. Ad-hoc request for ZERO data/samples for clinical purposes will be considered and expedited out-of-cycle, as to fulfil the clinical obligations of the ZERO Program. If the request is for research purposes, however, it will be treated as any other research applications regardless of the applicant’s role.

Please contact zeroDAC@ccia.org.au directly to enquire.