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Questions about clinical trials and research
Below are some questions about clinical trials and research you may want to ask your doctor to see if joining a clinical trial is right for your situation. Asking your doctor or the clinical trials team questions will help you make an informed choice.
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Practical issues
- What are my chances of benefiting from this research?
- What are the risks to me?
- Will I experience any side effects? How will they be treated?
- Are there any extra tests involved?
- Do I need to stay overnight in hospital?
- Will I need to take time off work? Will my day-to-day life be affected?
- Can I receive any reimbursement of out-of-pocket expenses?
- Can I still participate if I need to travel interstate or overseas?
- Can I be involved in more than one study at the same time?
- How much time do I have to think about whether or not to join this trial?
Other treatments
- Who will oversee my cancer care while I’m participating?
- If I join this study, will I miss out on other treatment opportunities later?
- Can I still take other medicines or complementary therapies while I’m involved in the trial?
- Who will look after my treatment if I leave the trial early?
My naturopath suggested I take zinc and vitamin B supplements. Because I’m on a clinical trial, I checked with the nurses. They were very encouraging and said it would be okay.
— Alan, diagnosed with multiple myeloma
Study background
- What is being tested in the trial or study and why?
- Is this the first time the intervention has been tested? If not, what were the results of the previous studies?
- How many other people will be involved in this research?
- How long does the research last? For how long do I need to be involved?
- If I take time to decide, will delaying the treatment affect how well it works?
- Will the trial use a placebo?
- If it is a random control trial, will I have the option to switch treatment arms if the cancer advances or I have bad side effects?
Legal and ethical questions
- Has the study been approved by an ethics committee?
- Can you go through the participant information with me?
- Can I have the participant information in a different language?
- Who will cover the treatment costs for any side effects or complications?
- How will my identity be protected while I’m participating, and who will have access to my information?
- What will happen with the results of the research?
- Who can I contact if I have a problem?
After the trial
- How will I receive feedback on the trial results?
- Will I have follow-up care through the clinical trials team?
- If I respond to the experimental treatment, will I still be able to get it after the trial is over?
Additional resources
A/Prof Andrew Redfern, Consultant Medical Oncologist, Fiona Stanley Hospital, Clinical Academic Oncologist, The University of Western Australia, and Lead Clinician, State Breast Cancer Collaborative, WA; Christie Allan, Program Coordinator – Clinical Trials, Cancer Council Victoria; Bronwyn Chalmers, Clinical Trial Coordinator, Westmead Breast Cancer Institute, NSW; Sarah Coulson, Coordinator, Oncology Clinical Trials, Projects and Research, Tasmanian Health Service, TAS; Kate Cox, 13 11 20 Consultant, Cancer Council SA; Annette Cubitt, Clinical Trials Manager, Department of Medical Oncology, Cancer Care Services, Royal Brisbane and Women’s Hospital, QLD; Pete Currie, Consumer; Amy Ives, Clinical Trials Coordinator, Department of Medical Oncology, Cancer Care Services, Royal Brisbane and Women’s Hospital, QLD; Sabina Jelinek, Clinical Research Nurse, Murdoch Oncology Clinical Trials Unit, WA; Dr Visalini Nair-Shalliker, Research Fellow – Prostate, Cancer Council NSW; Karlie Neilson, Project Officer – Cancer Research Division, Cancer Council NSW; Prof Mark Rosenthal, Medical Oncologist, and Director, Parkville Cancer Clinical Trials Unit, VIC; Joan Torony, CEO, TROG Cancer Research, NSW; Rebecca Weselman, Senior Clinical Trials Coordinator, Oncology Clinical Trials, St John of God Murdoch Hospital, WA; John Williams, Research Governance Officer, Cancer Council NSW.
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