Australian Research Into Susceptibility and aEtiology of Familial Glioma: the ARISE study
Help us understand familial glioma For families today and tomorrow
By completing a short survey, you can help us find families affected by glioma and build Australia’s first national registry to uncover inherited risk and improve care for future generations.
Glioma is a rare and debilitating primary brain cancer with poor survival and limited treatment options. Glioma includes glioblastoma (GBM), astrocytoma and oligodendroglioma. Individuals with a close relative affected by glioma, such as siblings or children, are twice as likely to develop the disease themselves, suggesting that genes may play a role. However, because this condition is uncommon, little is known about genes that may contribute to glioma development. Families and patients are left navigating questions about risk without clear answers, while clinicians go without the resources and guidelines to provide meaningful support.
Families where several members develop gliomas are very rare. However, studying these families can give us important clues about the genes that may increase a person’s risk of developing glioma. Because these families are more likely to carry inherited genetic changes linked to the disease, they provide a highly valuable opportunity to improve our knowledge of how gliomas develop.
Right now, Australia does not have a registry to find and work with these families. Creating a registry is a critical and overdue first step, which would provide a foundation for research into the genetics of familial glioma, help improve risk prediction, and guide better care for patients and their families.
Our vision
With the ARISE study, we want to advance research on inherited susceptibility and aetiology of familial glioma.
You are invited to express your interest in participating in glioma research. Please read the following information in full before deciding whether to express interest in this research.
This survey helps us connect with individuals and families affected by glioma who may be interested in taking part in future research. Completing the survey does not enrol you in a study. We are collecting basic information to understand the community’s interest in research participation. Your responses will guide the design of a scientifically sound, ethically responsible study for future grant applications and support efforts to secure the funding urgently needed to advance glioma research in Australia.
What information will be collected by this survey?
If you are a family with glioma, we will ask you to provide:
your name, postcode, age and email address.
whether you or a family member has been diagnosed with glioma.
what contribution you are willing to make to future research studies (e.g., complete surveys, provide DNA samples).
how you have heard about our proposed research.
If you are a medical professional, we will ask you to provide:
your name, postcode and email address.
how many glioma families you see every year.
how you have heard about our proposed research.
How long will the survey take to complete?
Approximately 2-5 minutes.
Confidentiality
We will store your responses for at least five years on secure Monash University servers accessible only to members of the current and future research team. Your data will be destroyed when it is no longer required.
Possible benefits and risks of registering your interest
Benefits: You might be invited to take part in a future glioma research study. If the study moves forward, participant recruitment would not begin before June 2026.
Risks: Although unlikely, a data breach could result in someone accessing the information you provided in the survey without permission.
Withdrawing your expression on interest
You can request to withdraw your expression of interest at any time by emailing arise-study@monash.edu. All the information you provided in the survey will be deleted from Monash University servers.
We are a multidisciplinary team of researchers based at Monash University. We share a commitment to understanding cancer susceptibility genomics. Collectively, we bring 15 years of experience spanning biological, epidemiological, statistical, computational and translational research. You can contact us at ARISE-study@monash.edu.
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If you would like further information regarding any aspect of this project, please contact the researchers at ARISE-study@monash.edu.
If you have a complaint concerning how this research is conducted, please contact:
Complaints Officer Office of Ethics and Research Governance Alfred Health 55 Commercial Rd, Melbourne VIC 3004 Phone: 03 90763619 | Email: research@alfred.org.au
