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Because research involves patient information, consent, privacy, and ethics, it is important that patients, families, clinicians, and researchers can clearly understand how research participation works.
Through the ARC Portal consent process, patients agree to take part in the ARC Portal, the associated WEHI Stafford Fox Rare Cancer Program and in future, ethically approved research programs.
De-identified clinical information collected through ARC Portal can be used to help improve understanding and treatment of rare cancers. Patients can additionally consent to providing tissue samples, such as blood, eyebrow hair or tumour tissue.
All requests for research data from the ARC Portal are reviewed by the ARC Portal Steering Committee and overseen by BioGrid Australia.
The WEHI Stafford Fox Rare Cancer Program is a research project focused on improving understanding and treatment of rare cancers. Enrolment in the ARC Portal requires consent to this research project, however the patient may withdraw consent at any time.
Rare cancers often affect small patient populations, making them more difficult to study than common cancers.
Research helps improve:
Every contribution helps strengthen the evidence available to future clinicians and patients.
Patient information is de-identified, with identifying details replaced by a unique code. Research outputs are presented in a way that does not identify participants unless they give express permission. De-identified data may be stored, reviewed, processed and transferred for approved rare cancer research under strict ethics, governance and privacy requirements.
Research requests for access to data associated with ARC Portal are managed by BioGrid Australia through their trusted data access request process and secure data linkage platform.
Participation in ARC Portal and enrolment in the WEHI Stafford Fox Rare Cancer Program or future, ethically approved research programs are linked within the same consent process.
Patients are not asked to separately opt into ARC Portal while opting out of the clinical-data research component. However, donation of blood, eyebrow hair and tumour tissue samples is completely optional.
Depending on the consent provided, information may include:
Any use of information is governed by approved ethics and privacy requirements.
Clinicians should explain that:
Patients should also be told that blood, eyebrow hair and tumour tissue donation are optional, and that they may withdraw from the ARC Portal and associated research projects at any time.
If a patient does not wish to take part in the ARC Portal and/or associated research, they do not have to.
However non-consent or withdrawal of consent means a referral will not be processed by the ARC Portal team, meaning the referring doctor will not obtain advice through ARC Portal.
Declining or withdrawing does not affect the patient’s routine treatment, relationship with their treating team, or eligibility for other future referral to ARC Portal or research projects.
ARC Portal welcomes opportunities to contribute to research, knowledge sharing, and collaborative initiatives that improve outcomes for people affected by rare cancers. Requests to use de-identified clinical information or samples for research is contingent on ethics approval and strict governance requirements.
Please contact the ARC Portal team to discuss potential collaborations.
Research outputs, publications, conference presentations, and related materials can be accessed through the Publications page.
If you are a patient looking for more information how you can support future research into rare cancers, head to the Patient and Families FAQs to learn more.
If you would like to learn more about ARC Portal's contribution to rare cancer research, research partnerships, or ongoing initiatives, we welcome your enquiry.