FAQs for Patients & Families

This project aims to help your doctor manage your rare cancer by providing advice from doctors who are expert at treating your particular type of cancer.

The project will also store data from your medical records with identifying information (e.g. your name and date of birth) removed so that we can gather information about larger numbers of patients with your type of cancer. We hope to get a better idea about why your tumour occurs, genetic changes associated with your type of tumour, and what may be the best treatment strategies. This is important for rare cancers as it is often hard to gather information from enough people to answer these questions or to conduct research.

In addition, you have the option of agreeing to be contacted again in the future to provide blood, a hair sample, or a tissue sample. We will only contact people about this in the future if there are enough people with your type of cancer to conduct a study on these samples. We don’t necessarily need you to provide anything right now if you agree.

The participant information and consent form provides more detail about the project and its aims which you are welcome to read here.

This project aims to help your doctor managing your rare cancer through a variety of ways. This could include providing advice on treatments, molecular testing or clinical trials you may be eligible to participate in. This advice typically include feedback from Australian or international oncologists with specialty interest or experience in your rare cancer type, without any travel or financial costs to you.

You may also choose to participate in the ARC Portal solely to contribute to rare cancer research.

This project will collect data from your provided medical records, with identifying information (e.g. your name and date of birth) removed to protect your privacy. By combining your data with others, we can gather information about larger numbers of patients with your type of cancer. From this we hope to get a better understanding of why your type of rare cancer developed, the genetic changes associated with your cancers, and how it responds to treatment. Your medical information is especially important for helping rare cancer research as it is much harder to gather large amounts of information for rare cancers. This is helpful whether you never had treatment, are currently having treatment, or previously received treatment for your cancer.

Because we collect this information for research we need your permission to proceed. In addition, you have the option of agreeing to be contacted again in the future to provide blood, a hair sample, or a tissue sample. We will only contact you about this if there is a specific research program for your type of cancer. We don’t necessarily need you to provide anything right now if you agree.

The participant information and consent form provides more detail about the project and its aims which you are welcome to read here.

Agreeing to provide a blood, hair or tissue sample is optional. You can consent to allowing us access to your medical records 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 do not need to provide anything right now.

If we contact you in the future to arrange collection of a blood sample, you can let us know that you have changed your mind, even if you have ticked that box on the consent form. It is always your choice to provide a sample.

Agreeing to provide a sample of your eyebrow hair is optional. You can consent to allowing us access to your medical records without agreeing to provide this sample.

Previous research has used eyebrow hair as a valuable source of DNA. If in the future we do need you to provide eyebrow hair, it will only be eight (8) individual hairs.

No, the dye will not interfere with our ability to extract the DNA from the hair.

Yes, information about your health, lifestyle and family history of cancer is still a valuable source of information that we can use to better understand your rare cancer.

Yes, information about your response to treatment, your health, lifestyle and family history of cancer is still a valuable source of information that we can use to better understand your rare cancer.

We will contact your referring doctor to provide us with the relevant information from the medical records they have at their individual practice. We do not need to access your My Health Record (if you have one).

We will obtain your most recent medical information from your referring doctor. This doctor will have your most up to date information which is what we will need for the Portal. If you change doctors in the future we may contact that doctor if we need to update your information.

You can withdraw your consent to the project at any time. You don’t have to give a reason. Contact us to let us know or fill out the Form for Withdrawal of Participation (last page of the consent form) and send it to us.

If you have a question that isn’t covered on this page, please contact us by email at: enquiries@arcportal.org.au.

We can answer questions by email, or if you’d prefer, we can call you back.