How your data can improve care through research

If you’re diagnosed with hepatocellular carcinoma (HCC, also called primary liver cancer), your doctor or hospital might send information about you and your health to the Upper Gastrointestinal Cancer Registry (UGICR).

This is a registry run by Monash University’s Cancer Research Program, within the School of Public Health and Preventive Medicine.

It’s collecting information about diagnosis, treatment and outcomes from thousands of patients from various parts of Australia (depending on tumour type) who have primary cancers of the pancreas, oesophagus, stomach, liver and biliary system.

By analysing this data, researchers will hopefully be able to see how different hospitals and clinics compare against agreed best practice.

They will then feedback this information to clinicians at each centre, who can decide whether any changes are needed to their hospital processes to make sure all patients with these cancers get the best care possible.

How it works

If your doctor or hospital is taking part, you’ll get a letter telling you that your details have been passed on to the registry unless you would prefer otherwise.

Your doctor or hospital will send the registry your medical records, including your name, date of birth, contact details, test results related to the cancer, cancer treatment details, names of treating hospitals and treating doctors.

You may also be invited to fill out several questionnaires about your symptoms and overall quality of care.

All the information is encrypted and stored securely at Monash University. It will be used to generate reports for hospitals, publications, presentations, and future research projects. The information will be reported in such a way that you cannot be identified.

If you don’t want to take part

Taking part in the registry is voluntary. If you receive a UGICR Invitation Letter, but do not want to participate, you’ll need to let them know.

Call 1800 432 231 or email with your name and office ID. You can find your office ID in a little box in the patient invitation letter (for example, L800). You can tell them what part you want to opt out of:

  1. You do not want to be contacted to complete questionnaires (partial opt out)
  2. You do not want to participate in the whole registry.

More information

The UGICR is registered with the Monash University Human Research Ethics Committee (MUHREC). The ethical aspects of the registry have been approved by the Human Research Ethics Committees of Monash Health; the Aboriginal Health and Medical Research Council of New South Wales; and the Cancer Council Victoria.

You can find out more on their website.


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