Researchers & Clinicians
What we do...
We partner with cancer clinicians to offer genome sequencing to young people with cancer. We also equip researchers with important data to advance scientific discovery in all areas relevant to cancer in young people.
What is Madeline's Model?
Madeline's Model embeds genomics into routine care to meet the life long needs of all young people with cancer and to accelerate research. Madeline's Model incorporates young person friendly consent processes. and resources.
How was it developed?
Madeline's Model was co-designed by families, young people, clinicians, researchers, scientists, ethicists and health professionals. We came together with a common purpose, to give young people with cancer the prospect of a better life.
Genomic sequencing is offered free to all young people with cancer aged 15 to 25 years at the Princess Alexandra Hospital, Brisbane. Our vision is that every young person with cancer has access to Madeline's Model.
What type of genome sequencing will be done?
Young people are offered Whole Exome Sequencing (WES) and RNA sequencing.
Who does the genome sequencing?
Testing is done at the Australian Translational Genomic Centre (ATGC), based at the Princess Alexandra Hospital, Brisbane. The team of academics, health care professionals and scientists is headed by medical oncologist, Professor Ken O’Byrne, and senior bioinformatician, Associate Professor Paul Leo. ATGC are NATA (National Association of Testing Authorities) accredited. To find out more information on ATGC please visit: Australian Translational Genomics Centre - Australian Translational Genomics Centre (qut.edu.au)
What is the consent process?
Around the time of diagnosis genome sequencing is offered to the young person with cancer.
Ethically approved consent is provided in two parts. Part one covers genome sequencing. Part two covers donating genomic and health information to the Australian Omics Library.
Consent is discussed with the patient by a member of the ATGC team.
Australian Omics Library
What is the Australian Omics Library?
The Australian Omics Library is a very large database that securely stores all the information that health professionals gather from a young persons genome sequencing, medical history and treatment.
Find out more about the Australian Omics Library here
Who can access the data?
Authorised clinicians, researchers and donating patients can access the data. Approved researchers may work for not-for-profit organisations such as charities, universities or hospitals and for profit commercial companies such as drug or technology companies. They will only have access to the data if they apply and are approved by the Australian Omics Library. Research must be in-line with the National Statement on Ethical Conduct in Human Research, 2007 (Updated 2018).
Who runs the Australian Omics Library?
The Australian Omics Library is a partnership between the Princess Alexandra Hospital, the Translational Genomics Research Centre (ATGC), Cancer Alliance Queensland (CAQ) and Australian Families 4 Genomics.
Who is the data custodian for the Australian Omics Library?
Australian Families 4 Genomics are in a unique position to build upon 15 years of investment by the Queensland Government in Cancer Alliance Queensland (CAQ), who are the custodian of the Australian Omics Library.
Can a person’s data be identified in the Australian Omics Library?
No, all the data will be de-identified. No one can access personal information such as name, address, date of birth except the person who owns the data.
How is the Australian Omics Library different?
The Australian Omics Library isn't limited to data from a single project or clinical trial. The systems that support the library bring together over 60 data sources which are continuingly updated. New information is added to the library generating a lifelong record of the young persons health care. This life long record is accesable at any time to the young person and approved clinicians and researchers.
To find out more?
For more information please contact: firstname.lastname@example.org