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Participating in Research

Becoming a participant in a research study gives you an opportunity to play a more active role in your health. It gives you access to new research treatments and the chance to improve the future health outcomes of people living with muscle, bone and joint conditions. 

Depending on the design of the research study (eg clinical trial) you may be assigned to a treatment group or a control group. Participants in treatment groups receive the treatment or intervention that’s being studied. Participants in the control group normally receive: no treatment, their usual care or a placebo. 

Deciding to participate in research is an important and personal decision. You might find it helpful to discuss your decision with your doctor, family member or friend before deciding whether to take part. 

Carefully weigh up the risks and benefits of participating. Benefits may include having access to new treatments and helping to advance health care. Risks may include unpleasant side effects related to the treatment, additional visits to a hospital or research site, the treatment provides no benefit or isn’t as effective as your usual treatment. 

Other things to consider before you decide whether or not to take part in a research study are:

  • eligibility – research studies have specific criteria that participants must meet to be eligible to take part. They help make sure the people in a trial are similar when it comes to things such as age, gender, health condition. Having all participants share similar traits means that there’s greater certainty that any changes that occurred during the study are a result of the treatment or intervention and not other factors

  • informed consent – researchers will give you a patient information and consent form which provides detailed information about the study including:  why the study is being done   how long it will take  ○  how it will be done  possible benefits and risks, including side effects   what you will and won’t be required to do. 

Ask questions 

As well as reading and understanding patient information you’re given, you should ask any questions you have. It’s important that you have a clear understanding of what’s involved in the research project before you start. Talk with your doctor, family and friends before you meet with the research team. Write down any questions or concerns you have so that you’re prepared when you meet. 

Your safety is a priority 

In Australia, the National Health and Medical Research Council (NHMRC) plays an important role in advising and guiding Human Research Ethics Committees. These committees exist to protect your safety and rights when participating in any research. 

Changing your mind – leaving a research study 

If you decide to take part in a research study and later change your mind, you’re free to leave at any time. Let the research team know that you’ve decided to leave the study. They will explain what will happen to the information they’ve collected from you’re involvement in the study. You may choose to let them know why you decided to leave – eg you found the travel too difficult, your condition was becoming worse, you didn’t realise how much time was involved – or you can leave without giving them a reason. 

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