Patient and families FAQs

No. The ARC Portal helps your doctor obtain advice from medical experts with experience in your type of rare cancer, so we can only accept a referral from your treating cancer specialist. 

If you think the ARC Portal may be relevant to your situation, speak with your treating specialist or healthcare team. 

We will obtain your most recent medical information from your referring doctor. If you change doctors in the future, we can update your ARC Portal record with the new clinician and bring across all relevant information

Yes. Your clinician will discuss this with you before your information is submitted. If you decide to take part, you will be asked to sign a consent form giving permission for participation in ARC Portal and associated research project(s). You may withdraw your consent at any time. 

Timeframes vary depending on the complexity of the case and the expertise required. In most cases, your doctor will receive guidance within a few weeks. Urgent cases are prioritised where appropriate. 

Your treating clinician or the ARC Portal team can advise you about expected timing for your referral throughout the process.

Yes. If you believe additional specialist input may be helpful, you can ask your healthcare team whether ARC Portal may be relevant to your situation.

Not every clinician will be familiar with ARC Portal, and information about the service is available on this website, or you can download a flyer with information for your clinician below.

No. The ARC Portal receives funding from the Australian Government and is provided free of charge to Australian clinicians and patients.

Your treating clinician is best placed to discuss whether a clinical trial may be appropriate for your situation. ARC Portal may also help clinicians identify relevant trials and emerging treatment opportunities.

ARC Portal reports are written for and addressed to your treating doctor. They contain highly specialised information that may not be appropriate for interpretation by patients. 

You may ask your treating doctor for a copy, but ARC Portal cannot directly provide you with a copy.

We are not able to provide individual medical advice directly to patients. However, we are very happy to assist your treating doctor if they submit a referral.

ARC Portal works alongside a number of organisations that provide support, information, advocacy, and practical assistance for patients and families. Please visit our patient support and resources page for more information.

This is a common experience for people diagnosed with a rare cancer. Support organisations can help connect you with patient communities, peer support programs, and others who understand the challenges of living with a rare cancer diagnosis. We recommend starting with Rare Cancers Australia.

Some organisations provide practical and financial assistance to help patients manage costs associated with treatment, travel, accommodation, and time away from work. 

Rare Cancers Australia may be able to provide guidance on available support programs. 

The ARC Portal is part of the WEHI Stafford Fox Rare Cancer Program, which collects clinical information from patients with rare cancers to learn more about how rare cancers behave, how patients respond to treatments, and other aspects about their health, lifestyle and family history of cancer. 

Because rare cancers occur so infrequently, there has been very little research into how they develop and how best to treat them. Understanding this may be important because it may help doctors to better select appropriate treatment options.

If you consent to participate, you can specify whether you consent to provide samples of eyebrow hairs, blood and tumour tissue for research purposes.

Your clinical information can help researchers learn more about rare cancers, including how they behave and how people respond to different treatments. 

Because specific rare cancers affect very small numbers of people, combining de-identified information from many patients can help build stronger evidence for future treatments. 

The participant information and consent form provides more detail about the research project(s) and aims, which you are welcome to read below. 

To protect your privacy, personal details (e.g. name and date of birth) are replaced with a unique study identifier or code. 

Information used to analyse patterns and outcomes for publications and/or presentations will be presented in a way that does not identify you, unless you have given express permission. 

Yes. You can withdraw from the project at any time, without reason, by completing and returning the last page of the consent form. 

If you withdraw, the ARC Portal or research teams will not collect additional information from you, although information already collected may be retained to ensure the research can be measured properly and to comply with legal requirements. 

You may also choose whether stored tissue samples, if previously provided, are maintained for future research, or destroyed.

No. Your decision not to take part, or to withdraw consent later, will not affect your routine treatment, your relationship with your treating team, or your eligibility for other future research projects. 

However, if you do not participate in the ARC Portal and associated research, your doctor will not be able to obtain advice and recommendations through the ARC Portal. 

Providing biological samples such as blood, eyebrow hair, or tumour tissue is optional and subject to your express consent. You can consent to allowing us access to your clinical information without agreeing to provide these samples. 

If you agree to provide these samples, we may contact you in the future if a suitable research project arises where those tissues would be used. You may withdraw your consent to provide tissue samples at any time. 

Yes. Providing blood samples is optional and contingent on your prior consent. If you are contacted to provide blood samples while participating in a study, you may change your mind, even if you have given prior consent. 

Eyebrow hair can be used as a source of normal DNA for comparison with tumour DNA in research studies. 

Providing eyebrow hair is optional and contingent on your prior consent. Only 8 hairs are typically needed and if your eyebrows are dyed, it will not interfere with the ability to extract enough DNA. 

The ARC Portal does not require access to your My Health Record. Only relevant medical information is provided to the ARC Portal, as determined by your treatment team or other health platforms as described in the patient information and consent form. 

Yes. Information about your cancer, treatment history, response to treatment, other health conditions and family history can help researchers better understand and treat rare cancers. 

This information is valuable whether you are currently receiving treatment or have received treatment in the past. 

No. Your consent is required to take part in ARC Portal and associated research project(s) before your personal health information is used. Your data will not be shared without your consent.