Benefits and risks of a clinical trial
Before you make the decision to enrol on a clinical trial, it’s important to think about what benefits and risks there might be. We’ve also put together some questions you might like to ask your doctor or the trial researchers, to help you decide what’s best for you.
Benefits of taking part in a clinical trial
Taking part in a clinical trial has many advantages, including the opportunity to have the newest available treatment for your disease. This may not be offered outside of the trial, or it may not yet be available through the NHS in your region.
If you have tried other treatment options that haven’t worked, a clinical trial could provide the chance to try something new.
Other benefits of enrolling on a clinical trial include:
- Close monitoring
Everyone who enrols on a clinical trial is closely monitored, and lots of people say that they find this reassuring as they get to speak to a doctor more frequently.
- Continuity of care
Many people are reassured by the fact that they'll see the same doctors, researchers and nurses on a trial. Michelle, diagnosed with myeloma, told us: “I found that on my trial, I had a dedicated smaller team headed up by a consultant, and I had more access to that person. Whereas when I had standard treatment there was a bigger team, I was seeing different people all the time who had to get to know me and my medical history with each new introduction. I personally preferred the trial approach as it was much more patient centred, more assuring and less overwhelming. In hindsight this was also more impactful and progressive, and I felt much more valued.”
- Access to experts
An expert team of researchers and specialist staff will be involved in every trial, and they will be happy to discuss any questions or worries that you have. During a trial, you’re also likely to have contact with a clinical nurse specialist (CNS) or a research nurse. The CNS will provide you with ongoing information about the trial, and is there to support both you and your loved ones.
- Helping yourself
Many people say that enrolling on a clinical trial helps them to feel more in control of their diagnosis, as they are making informed choices about treatment and the future. On a trial, you may be able to have treatment that wouldn’t otherwise be available to you.
Knowing what to expect on a trial can also be helpful if you feel overwhelmed or confused about blood cancer.
- Helping others
Even if a clinical trial doesn’t end up benefitting you directly, the information collected can play a very important role in finding and improving future treatments for blood cancer.
For some people, the thought of helping others – either now or in the future – can provide a sense of pride or motivation, and may help you to feel more positive about your own situation.
"It made a huge difference to my Mom when I told her how much trials helped others. She went from an immediate ‘no’ to a ‘maybe’. It’s important for her and her religion to support members of her community and give back."
- Rehab Asad, a community researcher
Potential risks it's worth knowing about
For most people, the benefits of enrolling on a clinical trial will outweigh any risks.
However, it’s important to consider what your personal risks may be, and ask your doctor about any worries or concerns you may have. This will ensure you get the best possible treatment for you and your situation.
Here are some things you might like to think about:
- Time and money
You will have to attend hospital or a clinic more often if you’re on a clinical trial, which could cost time and money and make things like childcare more difficult to arrange. Some clinical trials will offer to pay for your travel expenses – you can ask the trial team if this will apply to your trial, or check any printed information you are given. If you need any information translated or explained, ask your hospital what support they can provide.
- Anxiety and your mental health
It’s normal to be nervous about joining a clinical trial. For some people, these worries could develop into anxiety, which may impact your overall mental health.
It’s important to reach out for support if you feel like you’re struggling to cope with your worries, or if your anxiety is affecting your daily life and mood. You can ask your doctor or your GP to refer you for free counselling on the NHS – or, if you live in England, you can refer yourself online if you prefer. You may also like to give our Support Service nurses a call, or read our information about looking after your mind and emotions.
- Dealing with overwhelming amounts of information
In order to make sure that you fully understand everything about a clinical trial before you consent to join, the trials team have to provide lots of information about the trial, including any potential side effects and alternative treatment options. Some people say they find this process overwhelming and difficult to understand, especially if English isn’t their first language.
You may find it helpful to take someone to your appointments with you, or make notes to read and think about later. Our Clinical Trials Support Service can help to break down some of this information and talk through your questions. You can also ask your doctor and the trials team to explain something as many times as you need – don’t be afraid to tell them if you don’t understand what they’re saying.
Your hospital may also be able to offer an interpreter, or provide translated information in your native language. Ask your doctor for more information about this.
- Unknown side effects
As drugs and treatments in clinical trials are still in a testing phase, the trial team may not know what every potential side effect may be, or how side effects will affect you personally.
You and your treatment team will need to balance the possible benefits of being on a trial against the risks of short and longer-term side effects.
It can be alarming to read about side effects, but remember that everybody is different. You might not get any side effects at all, or you may decide that some side effects are worth it if it means that the treatment works.
- The treatment may not work
Although doctors and researchers will hope that everyone on a clinical trial benefits from the drugs or treatment being tested, this cannot be guaranteed – that is why the trial is being done.
The treatment you have may be more effective than standard care, but it also may not work for you, even if it helps others.
This can be difficult to understand and deal with, and it’s OK to ask for support if things don’t work out as hoped. Speak to the trial researchers or your doctor, or give our Support line a call.
You may also want to join our community forum, to connect with others in a similar situation who know what it feels like.
Watch Lymphoma Pharmacist Asjad Yousif and Precious Jason speak about how we can rebuild trust in clinical trials amongst Black, Pakistani and other minoritized communities.
Questions to ask your doctor or the trial research team
You will have the chance to ask questions before, during and after joining a clinical trial.
Your doctor, clinical nurse specialist (CNS) or the trial researchers should make sure that you’re aware of any potential benefits or risks of a trial before you agree to enrol on it, but you may also want to ask things like:
- What kind of trial is it?
- What is already known about the new treatment or procedure?
- How many people are on the trial?
- How long is the trial going to run for?
- Where is the trial based?
- How often will I need to have tests/treatment/visit the trial site?
- How will the treatment be given?
- What side effects may I get?
- Are there any trial support groups I can join, or is there a trial buddy that I can speak to?
- Are there any other people from my culture/background on the trial?
- Will I get any expenses paid, for example transport to the trial site?
- Can I still go on holiday or take time away from the trial?
- Will I need to adjust my work/study hours?
- Do I need to change anything about my daily life or routine?
- Who do I speak to with any further questions or complaints?
- Can I tell people about the trial?
- If the trial doesn’t work out for me, can I have more/different treatment afterwards?
- What are my options instead of a trial?
- What will happen to me if I choose not to join the trial, or if I leave the trial after joining?
It’s OK to ask for more time to think about things if you need it. Ask your doctor if you need to decide by a certain date, or whether you can enrol later if you change your mind.
"I know that many of my patients find being on a clinical trial is a positive experience because if they need further treatment they ask, “Do you have another trial for me?” They want their next treatment to be part of a clinical trial as well."
Professor Andrew Pettitt, Consultant Haemato-Oncologist.
Read more of Andrew's insights into clinical trials.
About our health information
This information about clinical trials is accredited with the PIF TICK, the UK's only quality mark for trusted health information.
Last full review December 2025. Next full review due December 2028. We may make factual updates to the information between reviews.
We would like to thank Consultant Haematologist Dr Priya Sriskandarajah for checking the clinical accuracy of this information. Thank you also to everyone who participated in the community research for this project, and shared their experience of clinical trials.
Worried about anything or have questions?
If you need someone to talk to, please don't hesitate to contact our Support Service by phone or email.