- The treatment may not work
- Cost and time of travelling to appointments
- Increased monitoring (More tests)
- Side effects from the treatment
- May need to stop current medication

One advantage of taking part in a clinical trial is you may gain access to a new drug, which would not be otherwise available. This is particularly important when treatment choices are limited or not working as it provides further treatment options and the new drug may be effective. Taking part in the trial will also advance research and benefit future patients.

When taking part in a clinical trial you will often receive more support compared to when on standard treatment. Your trial team will be available to answer questions and support you when needed. This increased access to a medical team is often reassuring. However taking part in a clinical trial may also mean more tests and hospital visits to monitor you closely. It’s important to consider the time and the cost needed to attend these appointments.

A disadvantage of taking part in a clinical is that there are no guarantees that the new drug will work. You may also have to stop taking your current medication. Sometimes this uncertainty can be difficult and talking to your medical team about this is critical as your mental and physical wellbeing is extremely important. It is also important to be aware that just like any other drugs, you may get side effects from the treatment you receive during a clinical trial. The trial team will be able to advise you on the expected side effects to help you weigh up the risks and benefits of taking part in the trial.

Are clinical trials safe?

Although you can never say that a clinical trial is 100% safe, strict guidelines minimise the risks. Clinical trials undergo extensive review and must receive ethical approval before they can go ahead. Additionally, participants of clinical trials are closely monitored for adverse effects, so if they do occur the medical team can intervene quickly. Any adverse events that happen on a trial are recorded and reviewed as patient safety is the most important aspect of any trial. Before taking part in a clinical trial any risks will be discussed with you so you can weigh up the risk and benefits and decide whether the trial is right for you.

What is a placebo and what happens if I’m given it?

A placebo is a ‘dummy drug’. It is used to ensure that the results of a trial are not affected by participants knowing whether or not they have been given the ‘real’ treatment. The design and purpose of the trial determines how a placebo is given. In some cases participants may only receive a placebo drug. However in many trials the new drug is being tested along side another standard treatment so even if you are randomised into the placebo arm you will still be getting active treatment for your cancer.

It can seem discouraging that you are not guaranteed to get the real drug in a trial but this is often the best way to determine if a drug works and is therefore licenced for use. It is important to note that some trials will allow you to move from the placebo to the real drug if you meet certain criteria such as your cancer progresses. Discuss with your medical team whether this is an option for you.

Can I leave a clinical trial at any point?

Yes. It is your choice to take part and stay in a clinical trial. You can leave at any point, and it will not affect the care you receive.

Can I take part in multiple trials?

In most cases, you can’t take part in more than one trial at a time, and this is normally stated in the exclusion criteria of the study. This is because it would affect the results of the study and more importantly having more than one new drug that hasn’t gone through the trial process could be harmful. There are cases where you may be able to take part in different trials such as an observational trial and randomised trial but it is important to discuss this with your team.

How do I find a trial that is right for me?

Our curated clinical trial database allows you to find clinical trials throughout the world. We have clear explanations of trials, designed specifically for patients. You can also talk to your doctor as they may be aware of trial opportunities.

What if I can’t find a clinical trial?

Sometimes you may not be able to find a trial. This is because there are usually only a small number of trials running at one time and they often have strict joining criteria to keep participants safe. However, although you may not currently meet the criteria to take part in a trial you may for a future trial. Additionally there are phase 1 trials not specific to osteosarcoma and expanded access programmes which some people can take part in. Your doctor can discuss these and other options with you.

What if my cancer progresses?

Throughout the trial, you will be closely monitored. If there is evidence of cancer progression the medical team will discuss your options with you.

Is financial support available for clinical trials?

You do not need to pay to take part in a clinical trial but there may be certain costs that are not covered such as travel expenses. Ask your medical team about which expenses are covered.

Additionally, some charities can help cover expenses associated with clinical trials. Our map of osteosarcoma organisations across the globe will help you find the right support.

Will I get paid for taking part in a clinical trial?

No, but you may sometimes have your expenses paid for. Ask your medical team about which expenses are covered.

Can I access trials at other centres?

Yes. The clinical trial does not have to be at your usual hospital for you to be eligible for it. However, it is important to discuss it with your medical team as they may need to refer you to the trial centre and share your medical information with them. You can also access your own medical records and share them with other centres. Find out how to access your records here.

Are clinical trials only for those without treatment options?

No. There are many different trials for different situations. Some trials may be to look at a new treatment (these are often only for patients without treatment options) whereas others may be looking at similarities between different patient groups and may not involve any intervention. Find out more about the types of trial here.

What is the exclusion and inclusion criteria and why is it there?

Every clinical trial will have strict criteria to determine who is eligible for the study. This includes exclusion criteria and inclusion criteria. If you meet any of the exclusion criteria you will not be eligible for the trial. If you meet any of the inclusion criteria you may be eligible for the trial but it doesn’t guarantee it. These criteria are in place to ensure that the results of the study answer the question that is posed, but is also there for participant’s safety. Testing new drugs comes with risks so certain people who may be at high risk from the drug are not eligible.

Will my doctor know about clinical trials?

Your doctor may not be aware of clinical trials that you are eligible for. You can search for clinical trials through our curated database and either contact the clinical trial team directly or discuss it with your doctor who may be able to refer you.

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“It’s that connection between the patient and the team and myself and also the interplay between looking after a teenager and their parents and the rest of the family I found really rewarding”

Dr Sandra Strauss, UCL

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