Frequently asked questions for clinical trials | Sarcoma UK
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Frequently Asked Questions for Clinical Trials

Here are answers to some of the most common questions about clinical trials for sarcoma. 

 

You may still have a lot of questions. If you’d like to talk to someone, you can get in touch with our friendly Support Line team.  

Are there any trials out there that could help me or my family member?

Our Clinical Trials Hub lists sarcoma clinical trials recruiting in the UK. Because sarcoma is a rare cancer with many different subtypes, there may only be a small number of clinical trials available at one time, or none at all. 

For more information on the availability of these trials, talk to your clinical team, or reach out to our Support Line. 

How safe are clinical trials?

Clinical trials are designed to protect patients as much as possible. Before a trial is allowed to go ahead, it must pass strict checks by ethics committees and regulators. All trials monitor participants closely, especially for side effects. Your clinical team can talk you through the risks and benefits before you decide whether to take part.  

Can I take part in a trial in a different part of the UK to where I live?

Yes, you can, but it may depend on the trial and whether the trial centre can accept out-of-area participants.  

It is important to know that you may need to travel often. Some trials may help with travel or accommodation costs, so it is worth asking the research team what support is available. You can also find more information about practical and financial support for clinical trials on our support page 

What if there isn’t a trial for my type of sarcoma?

Sadly, not all types of sarcoma have trials available at all times. This can be frustrating. If there isn’t a trial for your specific sarcoma, you might still be able to take part in a phase 1 trial that is not focused on a particular cancer type. While they may not be designed just for sarcoma, some people do benefit from taking part. 

You could also support research by joining studies that don’t involve treatment, like surveys or data collection. These studies could help improve future care and may lead to new trials. Ask your research nurse or clinical team if there are any of these studies available. 

Why are there age restrictions in certain trials?

Each trial has its own eligibility criteria, which can include age. This helps researchers make sure the treatment is being tested safely and fairly.  

For example, some medicines may work differently in children than in adults, so trials are sometimes age specific. These rules are in place to protect people taking part. 

Where can I find updates on a trial?

If you are already taking part in a trial, your research team will keep you informed of any changes or findings. For general updates, you can check trial listings on websites like ClinicalTrials.gov. Just be aware that some results can take years to become available.  

If I go on a trial, how likely is the treatment to work?

That depends on the phase of the trial and what’s being tested. In early phase trials (phase 1 and 2), the goal is usually to test safety, not necessarily how well a treatment works. Some people do benefit, but this isn’t guaranteed.  

Being accepted onto a trial also does not guarantee you will access a new treatment. You might be in the group who gets the standard treatment or the group who gets the new treatment. You may also receive a placebo, a dummy drug like a sugar pill that looks real but does not contain any actual medicine. 

Your team will talk you through what the trial hopes to achieve before you decide whether to join. 

Can I stop the trial at any time?

Yes, you can stop taking part at any time, for any reason. Your clinical team will support you whatever decision you make. You will need to talk this through with your clinical team beforehand to ensure you stop any treatment safely.  

Can I take part in trials abroad?

It is sometimes possible, but usually more complicated. Clinical trials in other countries may not take patients from overseas and accessing treatments this way can be very expensive.  

If you’re interested in a trial outside the UK, speak with your clinical team or the Sarcoma UK Support Line. They can help you understand more about them. 

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