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FAQs

General

What is the Zero Childhood Cancer program?

Zero Childhood Cancer is the largest single initiative ever undertaken for children with cancer in Australia. A truly ground-breaking program led by Children’s Cancer Institute and the Sydney Children’s Hospitals Network that brings together all major Australian clinical and research groups working in childhood cancer to offer Australia’s first ever personalised medicine program for children with high-risk or relapsed cancer.

What is personalised medicine?

Personalised medicine is tailor-made treatment, customised to each individual patient. For example two children who have the ‘same’ kind of cancer and who show the same symptoms, may respond very differently to the same anti-cancer drugs.

One size doesn’t fit all. By using personalised medicine, the goal of Zero Childhood Cancer is to treat each child’s cancer in the most targeted way possible, to improve survival, reduce side effects, and aim for a cure for every child.

What is involved and how does it work?

For Zero Childhood Cancer, scientists at Children’s Cancer Institute and other specialised laboratories around the country analyse cancer cells taken from each high-risk or relapsed child on the national clinical trial to precisely identify their cancer’s molecular and genetic features. We screen the cells against hundreds of drugs to find which ones, alone or in combination, are most likely to kill the cancer. We grow the cells in our laboratory models of disease to provide further evidence that these drugs are really likely to be effective at treating the child’s cancer. All this information is used by the program’s Multidisciplinary Tumour Board to make decisions about the best treatment for each child.
The program’s ultimate goal is to help all children with cancer to survive and lead better quality lives by developing ways to tailor treatment for each child.

Which children can to participate in the Zero Childhood Cancer program?

Zero Childhood Cancer is available to infants, children and adolescents with the highest-risk cancers, those with a less than 30% chance of survival. These children include those suffering from high-risk or relapsed cancer, childhood brain tumours, sarcomas, infant leukaemias and neuroblastomas. Participation in the trial is only possible through the child’s paediatric oncologist.

What is translational research and why is this important?

‘Bench to bedside’ research translates findings from fundamental scientific research into everyday clinical practice to improve human health and well-being. This approach gives children with cancer the highest possible chance of survival and quality of life. Zero Childhood Cancer brings together all major Australian clinical and research groups working in childhood cancer to form a translational research partnership that brings research closer to patients than ever before.

What has happened so far with Zero Childhood Cancer?

The first stage of the Zero Childhood Cancer program began in 2016 with a pilot study for children with high-risk cancer being treated in New South Wales. During this pilot, the platform required to create a personalised medicine pipeline was established and tested. This involved multiple steps, including developing a reception process for cancer samples being sent from all over Australia to a centralised tumour bank, and establishing the best possible methods for molecular profiling, drug screening and drug efficacy testing.

In 2017, following successful completion of the pilot study, a national clinical trial was launched. At 31 October 2018, 127 children with high-risk cancers from all over Australia have been enrolled on the state-of-the-art trial, which will run for three years. The trial is free to all children who meet enrolment criteria and is being sponsored by the Australian and New Zealand Haematology/Oncology group (ANZCHOG).

What is happening next?

The Zero Childhood Cancer clinical trial will remain open until 2020 and will be recruiting new children with aggressive cancer each year until then. 

Through the trial, Zero Childhood Cancer is generating a wealth of new research data, including valuable molecular and genetic information about childhood cancers. This data is adding enormously to our knowledge and understanding of childhood cancer and will be shared nationally and internationally to contribute to future research discoveries. In this way, Zero Childhood Cancer is not only benefiting children today, but will continue to benefit all children with cancer in the future.

Parents

What is the aim of the study?

Zero Childhood Cancer is a research study investigating whether a child's individual tumour genetics or biology can be used to better predict responsiveness to a particular drug. This is an example of personalised medicine.

Is my child eligible for the Zero Childhood Cancer program?

The participants enrolled on this study are determined using strict eligibility criteria in consultation with their treating oncologist and the Zero Childhood Cancer team. The focus of the Zero Childhood Cancer program is children with the most aggressive cancers. In all cases, please speak to your treating oncologist first and they will be able to access additional information specific to your child’s eligibility.

Will my child get access to experimental drugs if enrolled on this study?

Zero Childhood Cancer is not a drug trial. The aim of the program is to test scientific methods to better match a drug to a child's unique tumour based on the biology and genetic footprint of the tumour. If useful information can be gained through this experimental scientific analysis, a panel of expert oncologists and scientists will issue a report back detailing this information and relevant potential treatment options to your child's treating oncologist.

How can I enrol my child in the Zero Childhood Cancer clinical trial?

Please speak to your treating oncologist and they will be able to access additional information specific to your child’s eligibility. If your child meets the eligibility requirements, they may be enrolled on the trial.

What is the risk of enrolling in the Zero Childhood Cancer clinical trial? Could my child be worse off by taking part in an experimental study?

There are risks in any clinical trial, which are explained prior to enrolment. In paediatric oncology, many children participate in clinical trials to access experimental therapies. Research shows children on clinical trials generally have better outcomes than those who aren’t. While we cannot guarantee a better outcome for any individual child on the Zero Childhood Cancer clinical trial, participating children will receive standard of care, the current best known treatment, as a minimum.

My child does not fit the inclusion criteria. Can I pay for the service outside the trial?

No. Children are enrolled in the Zero Childhood Cancer clinical trial only if they meet strict eligibility criteria.

Does my child need to have extra tests or procedures to be enrolled on the study?

Yes - the study requires a biopsy with a sample of fresh tumour in order to do the required laboratory testing. Gaining sufficient tissue is critical in order to maximise the chances of being able to do all necessary scientific analysis. The importance of this will be discussed with your treating oncologist and/or surgeon.

What are the timings of the Zero Childhood Cancer program?

The first stage of the Zero Childhood Cancer program began in 2016 with a pilot study for children with high-risk cancer being treated in New South Wales. During this pilot, the platform required to create a personalised medicine pipeline was established and tested. This involved multiple steps, including developing a reception process for cancer samples being sent from all over Australia to a centralised tumour bank, and establishing the best possible methods for molecular profiling, drug screening and drug efficacy testing.

In 2017, following successful completion of the pilot study, a national clinical trial was launched. At 31 October 2018, 127 children with high-risk cancers from all over Australia have been enrolled on the state-of-the-art trial, which will run for three years. The trial is free to all children who meet enrolment criteria and is being sponsored by the Australian and New Zealand Haematology/Oncology group (ANZCHOG).

Will my child be able to be treated by my local oncology centre?

Yes, all Australian paediatric cancer centres are open to the clinical trial, meaning, if eligible for the trial, your child can remain at your current treatment centre and will not need to travel. Participating hospitals include: Sydney Children's Hospital, Randwick John Hunter Children's Hospital The Children's Hospital, Westmead Monash Children's Hospital, Clayton Royal Children's Hospital, Melbourne Women and Children's Hospital, Adelaide Lady Cilento Children's Hospital, Brisbane Royal Children's Hospital, Perth

Is the Zero Childhood Cancer program for children in Australia only?

The Zero Childhood Cancer program involves all paediatric oncology units across Australia. There are 950 children and adolescents who are diagnosed with cancer every year in Australia, and approximately 210 of these patients have high-risk cancers on diagnosis or after relapse, and are eligible for this study. The Zero Childhood Cancer program recruits patients from all paediatric oncology units across Australia. The program has formed a collaborative network of multidisciplinary experts from national and international medical research institutions and hospitals to deliver high quality results in a clinically-relevant timeframe.

For more details, please refer to the Collaboration Map. Regardless of whether your enquiry is domestic or international, please speak to your treating oncologist as your first point of contact.

How much does the Zero Childhood Cancer program cost parents?

There is no charge for Australian children to be part of the study. Children’s Cancer Institute and Sydney Children’s Hospitals Network are raising the necessary funds for the full roll out of the program and the tests required for each child. International enquiries will be subject to different criteria which you will need to discuss with your treating clinician.

How do I find out more?

Please contact your treating oncologist who will be able to make contact with us via email.

Investors

What is the Zero Childhood Cancer Capacity Campaign?

The Zero Childhood Cancer program is an innovative and translational personalised medicine program that offers the very real opportunity to research a revolutionary new approach for childhood cancer. But it is complex and expensive. The Zero Childhood Cancer capacity campaign to support this transformational program aims to raise $12 million, by engaging the generosity of community-spirited corporates, and compassionate philanthropists Australia-wide to help us get closer to one day curing every child.

What makes the Zero Childhood Cancer Capacity Campaign so unique?

The Zero Childhood Cancer capacity campaign is a joint initiative of Children’s Cancer Institute, Sydney Children’s Hospital Foundation. It is a national, landmark campaign that has harnessed unprecedented collaborative fundraising energy.

Why should I invest (financials)?

To enable the national roll out of the Zero Childhood Cancer program, we need at least $58 million of funding to ensure the required equipment, facilities and people are in place. These funds must be raised on top of current research requirements. To date, Children’s Cancer Institute has successfully secured commitments of $42 million from government bodies and funding partners. The scientists and researchers embarking on this visionary program are now turning to the community for support. For more details, please refer to the Financial Table.

Who do I contact?

If you would like further information about joining us a financial supporter for the landmark Zero Childhood Cancer capacity campaign, please contact us via +61 1300 656 931 or email