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1.     Am I eligible for this study?

To be eligible for this study​ you must be:

  • Participating with the UGICR

  • Newly diagnosed with pancreatic or oesophageal cancer (up to three months post-diagnosis)

  • Diagnosed, managed and/or treated at a participating trial site

  • English speaking 

  • Able to access an IT device and/or Internet

2.     What is the purpose of this research? 

People with pancreatic, oesophageal and stomach cancer may have a range of symptoms that impact their quality of life. We think that if a patient frequently completes questionnaires about their symptoms, and these questionnaires are sent to a specialist nurse, it may help improve a patient’s quality of life. This is because the nurse can see which patients are having severe symptoms and they can coordinate care to make sure the patient is seen by or referred to the right health professional for further care when needed. However, to find out if this is effective in improving  quality of life for people with pancreatic, oesophageal or stomach cancer we need to test it.

3.     What does participation in this research involve? 

Taking part in this trial will not change the medical care you receive, during this trial you will continue to receive the best medical care available to you through your treating team. 

If you decide you want to take part in this trial, you will be sent an electronic link via email or text message (SMS) to create a PROpatient account. Your PROpatient account will be used for all activities relating to the trial. Once your account is set-up you will be asked to select if you consent to taking part in the trial. By selecting yes, you are telling us that you:

  • Understand the information you have read

  • Consent to take part in the trial

  • Consent to be involved in the research described

  • Consent to the use and collection of your personal and health information as described in this document

4.     What are the possible benefits of taking part? 

We cannot guarantee or promise that you will receive any benefits from being involved in this trial, however, possible benefits may include earlier care for severe or worsening symptoms when they occur and this may lead to improved quality of life, decreased distress and improved emotional wellbeing.​​

5.     What are the possible risks of taking part? 

  • Distress or Discomfort

    • It is possible that you may become upset or distressed when completing questionnaires or discussing your symptoms with the PROpatient nurse. If this occurs you can speak to the PROpatient Nurse who can provide you with contacts for counselling or other appropriate support, such as Cancer Council Helpline, Beyond Blue or Lifeline.

  • Data Confidentiality

    • In the unlikely event of a data breach the PROpatient research team will seek immediate guidance from the Monash University’s Data Protection and Privacy Office to make sure that the breach is managed in line with relevant regulations and legislation.

6.     How will my information and privacy be protected? 

​By consenting to participate in this trial you are consenting to the PROpatient research staff collecting and using personal and health information about you for purposes of the study. Any information collected as part of this study that can identify you for example, name or date of birth will remain confidential. Any information collected for the purpose of this study that can identify you will be treated as confidential and securely stored for at least 7 years before being destroyed. Your information will only be used for the purpose of this study and will only be released with your permission, except as required by law.

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