Being part of a clinical trial

Glossary

What you need to do when you agree to join a clinical trial depends on what kind of research it is. Generally, only treatment trials require preparation or ongoing follow-up, but it depends on what the study is testing and what phase it is in.

Your participation is usually organised by one person (often a clinical trials or research nurse), but you may come into contact with different members of the research team. Your overall care will probably continue to be coordinated by your cancer specialist.

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Before the trial starts

  • Discuss the trial with a member of the clinical trials team, your oncologist or other cancer specialists.
  • Read the participant information. You may want to discuss the information with family, friends or your GP.
  • Ask your doctors or the clinical trials or research nurse any questions you have about the study. For some suggested questions see the question checklist.
  • Have any medical tests, such as a CT scan and blood test, to check that the trial is suitable for you.

During the trial

  • Follow the instructions you are given about the trial to help ensure that the trial results are as reliable as possible. That means going to all appointments, having the required tests, taking medicines at the specified time, and completing logs or questionnaires.
  • Be prepared for more tests and visits to your doctor than you would normally have. This is to monitor your health and to see if and how the treatment is working. The research team will also ask about how you are feeling emotionally and physically.

After the trial is over

  • Researchers may stay in contact with you and collect follow up information for some time after the trial so they can gather long-term information on how you are doing.
  • You will return to having the standard care and/or check-ups that are appropriate for you, depending on the stage of the cancer and what your cancer specialist recommends.

Continuing access to medicines

Many people wonder whether they’re able to continue receiving the experimental treatment after a trial is over.

This depends on several factors including the trial phase and results, how effective the treatment was for you, what the recommended course of treatment is, and whether the trial sponsor is prepared to continue providing the treatment.

Some people join clinical trials to access treatments that would otherwise not be available. It can be frustrating to not be able to continue with a promising treatment after the study ends.

In many cases when the trial shows that the experimental treatment is effective and has no significant side effects, treatment may be continued long-term even after the trial is over.

Ask your doctor or clinical trials nurse whether it’s possible and advisable to continue the experimental treatment.

Click on the icon below to download a PDF booklet on clinical trials and research.

    Understanding Clinical Trials and Research

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Printed copies are available for free - Call 13 11 20 to order

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The iBooks application must be installed on your Apple device before you can read the EPUB.
Different ways to download an EPUB file to your Apple device:

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  • copy EPUB files into DropBox (or a similar service) and use the DropBox app to send them to iBooks.
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Need more help? Visit: http://support.apple.com/kb/HT4059

Kobo

To download an EPUB file to your Kobo from a Windows computer:

  • download and save the EPUB directly onto your desktop.
  • connect your Kobo to your computer using the USB cable and tap “Connect” on your eReader.
  • select “Open folder to view files” to view the contents of your Kobo.
  • navigate to where you have stored your EPUB file in “Finder”, in documents or downloads, and drag and drop it into the Kobo window. You can now disconnect your Kobo to read the eBook.

To download an EPUB to your Kobo from a Mac:

  • download and save the EPUB directly onto your desktop.
  • connect your Kobo to your computer using the USB cable and tap “Connect” on your eReader.
  • open your “Finder” application.
  • select “Kobo eReader” from the listed devices to view the contents of your Kobo.
  • navigate to where you have stored your EPUB file in “Finder”, probably in documents or downloads, and drag and drop it into the Kobo window. You can now disconnect your Kobo to read the eBook.

Turn on your Kobo and your EPUB will be located in “eBooks”, while a PDF will be located in “Documents”.
Need more information? Visit: http://www.kobo.com/help/koboaura/response/?id=3784&type=3

Sony Reader

To download an EPUB file on your Sony Reader™:

  • ensure you have already installed the Reader™ Library for PC/Mac software
  • select the eBook you want from our website and click the link to download it.
  • connect the Reader™ to your computer.
  • open the Reader™ Library software and click “Library” in the left-hand pane and select the eBook to view it.

Need more help? Visit: https://au.readerstore.sony.com/apps_and_devices/

Amazon Kindle 2nd Generation devices

EPUB files can’t be read on the Amazon Kindle™. However, like most eReaders, Kindle™ 2nd Generation devices are able to display PDFs. We recommend that you download the PDF version of this booklet if you would like to read it on a Kindle™.
To transfer a PDF to your Kindle™ via USB cable from your computer or Mac:

  • download the PDF directly onto your computer.
  • connect the USB cable to your computer’s USB port, and the micro USB end of the cable to your Kindle™. Note: the Kindle™ won’t be available as a reading device while it is connected to your computer until it has been disconnected.
  • open the Kindle™ drive and several folders will appear inside. The “Documents” folder is where you will need to copy or drag the PDF to.
  • safely eject your Kindle™ from your computer and unplug the USB cable. Your content will appear on the Home Screen.

Kindle also provides a Kindle Personal Documents Service that allows users to send documents as an attachment directly to your eReader. For more information on this service, visit http://www.amazon.com/gp/help/customer/display.html/ref=help_search_1-1?ie=UTF8&nodeId=200767340&qid=1395967989&sr=1-1
For more information on accessing a PDF on your Kindle™, visit www.amazon.com/manageyourkindle, log in to your account and click on Personal Document Settings.
Need more help? Visit https://www.amazon.com/gp/help/customer/display.html?nodeId=200375630

Android and PC

You can also download and open eBooks on Android devices and PCs with appropriate apps or software installed. Suitable eReader apps for Android include Google Play Books, FBReader and Moon+ Reader. Suitable software for PCs include Calibre and Adobe Digital Editions.

This information was last reviewed in July 2018
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