Taking part in a clinical trial

This information is about questions you might have if are thinking about taking part in a clinical trial. This includes questions about finding a trial, the practicalities of taking part and what happens after the trial has ended. It also includes a list of questions you might like to ask your medical team or the clinical trials team. We have separate information about clinical trials that you might also find helpful.

If you have any questions which are not answered here, you can email TrialsLink. Our helpline team are also here to support you if you feel a listening ear would be helpful.

On this page

What should I consider before taking part in a clinical trial?

How can I find a clinical trial

What happens during a trial?

What happens after a trial?

Advantages and disadvantages of clinical trials

What questions should I ask?

Where can I find out more about clinical trials?

Frequently asked questions about clinical trials

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What should I consider before taking part in a clinical trial?

Deciding whether or not to take part in a clinical trial can involve a great deal of thought. You might find it helpful to think through some key questions to help you in reaching a decision. Remember that you can ask your medical team any questions about clinical trials.

• Do I understand what is involved in taking part in the trial?
• Do I understand the potential advantages and disadvantages of taking part?
• Do I understand that I might not benefit from the trial?
• Have I had an opportunity to ask questions?
• Have I got all the information I’d like to help me make my decision?
• Do I feel I will be able to ask the trial team questions?
• If the trial is randomised, am I happy that my doctor and I cannot decide which treatment I have?
• If the trial is blinded, am I comfortable that I will not know what treatment I am receiving?
• Are there any practical implications to consider, such as travel and an increased number of visits to hospital, or having to self-administer injections? How will I manage them?

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How to find a clinical trial?

Your medical team might ask you if you would consider taking part in a clinical trial. Equally, you could ask your medical team whether there is a clinical trial suitable for you. You can also search for trials yourself. There are several places you can find information about trials that might be suitable for you. 

• Our clinical trials information service, Lymphoma TrialsLink, has a database of lymphoma clinical trials that are taking place in the UK. You can use it to search for a trial that might be suitable for you.
• The Lymphoma Coalition has a database of clinical trials and treatments that you can search by country.
• Blood Cancer UK has a Clinical Trials Support Service, where registered nurses offer personalised support around understanding which clinical trials are available and support you to decide if a clinical trial might be right for you.
• The National Institute for Health and Care Research (NIHR) is a government organisation that aims to improve the health and wealth of the nation through research. It has a searchable database of clinical trials at Be Part of Research.
• Cancer Research UK is a charity that funds research and provides information on all types of cancer. They maintain a database of clinical trials taking place in the UK.
• ClinicalTrials.gov is a US database of clinical studies that are being conducted around the world, including the UK. You can search for trials by country.
• The World Health Organization runs an international clinical trials registry that you can search by country.

If you find out about a trial that you might be eligible for, discuss it with your doctor. You can print the information you find and show it to them. They can check the eligibility criteria and find out whether you may be suitable.

“I would say to people, look at clinical trials sooner rather than later although you may not get the option you want first time. On the Lymphoma Action website, and searching more widely, you can get a sense of how many trials are going on at any time. Talk to your doctor about it if it is something you may be interested in.”

Andy, who is taking part in a trial for follicular lymphoma

Read more of Andy’s personal story, where he describes his experience of taking part in a clinical trial. 

What happens if there isn’t a trial suitable for me?

There is not always a suitable trial for everyone. There are a number of reasons for this:

• There are only a small number of trials running at one time.
• Trials have strict eligibility criteria. This is to make sure that participants are safe, and that the results of different treatment groups can be compared reliably.
• The location of the trial might not be suitable for you.

If there isn’t a suitable trial open initially for you to take part in, it’s worth checking again at a later date as new trials open frequently. You can also talk to your medical team about alternative options.

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What happens during a clinical trial?

In this video, the team from University College London Hospital (UCLH) talk about the staff who might look after you if you take part in a clinical trial.

A trial team will look after you and your care during the trial. 

• Study investigator: the study investigator is usually a consultant at the hospital. They oversee your care as part of the trial.
• Research nurses or clinical nurse specialists: these nurses are dedicated to the care and support of people participating in the trial. You can discuss any worries or questions you might have with the nurses.

If you start to feel unwell during the trial, contact your trial team and they will look after you. If you are taking part in a trial in your usual hospital, some or perhaps all of the trial team will be the same as your usual team.

The clinical trials team at University College London Hospital (UCLH) talk about what happens if you take part in a lymphoma clinical trial.

Most treatment trials follow a similar process:

• Informed consent given: Your doctor explains the trial and you are given a ‘patient information sheet’ to read. Although it is called an information sheet it may be several pages long. This gives you details about the trial so you can make an informed decision about whether or not you want to take part. You can ask as many questions as you want. You can show the information to someone you trust like a family member or your GP if you want to. If you decide to take part, you are asked to sign a consent form to show that you understand the information you have been given and agree to take part. Signing the consent form doesn’t mean you have to continue to take part if you don’t want to. You can change your mind at any time during the trial and withdraw from the trial without giving a reason.  If you are aged under 16 and would like to take part in a trial that involves a medicine, your parent or guardian will be asked to provide consent on your behalf.
• Eligibility assessed: Once you agree to take part, you have tests to check if you are suitable for the study. You can only take part if you meet strict criteria called ‘eligibility criteria’. If you do not meet the requirements for the study, you will not be able to take part in the trial. Your doctor will discuss other options with you.
• Treatment: You will be assigned to one of the treatment groups. During the treatment period, you visit the hospital regularly for treatment and tests. You might be given some treatment to take at home. Details about tests and treatments are provided in the information sheet. This tells you how the treatment is given, how often you have it and how long you are treated for.
• Follow-up: When treatment is finished, you go to the hospital regularly for check-ups to see how you are doing. 

Trials are monitored closely throughout to make sure any problems are picked up and dealt with quickly. The protocol can be changed if necessary during the course of the trial. For example, the trial might be expanded to recruit more people, or the closing date might be changed if recruitment is slower than expected.

A trial might be stopped early if there are concerns about safety or if it is not likely to come up with a meaningful result. This can happen if the organisers have difficulty recruiting enough people to take part. If it becomes obvious that one group is doing much better than the other groups, the trial might close early, and everyone might switch to the better treatment if possible.

You have the right to withdraw from a trial at any point. If you would like to withdraw from the trial, you can do so at any point and you don’t need to give a reason. However, it can be helpful for the trial team to know a bit about your decision, so that they gather as much information about the treatment as possible. 

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What happens after a trial?

For most trials when they finish, there is a period of follow-up. However, not all trials have this follow-up period. You will be asked if you consent to the follow-up period. You can withdraw your consent at this point for any reason. The duration of follow-up can vary from a few months to a few of years.

Tissue samples from your biopsy and blood samples are often stored for use as part of a trial or as part of a biobank (collection of cancer samples) for future research. This does not happen without your knowledge. Some trials only need samples for research and do not involve treatment. In some trials, you can opt out of having your samples stored. For the trials that don’t allow you to opt out of having your samples stored, this will be made clear before you start the trial. 

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Advantages and disadvantages of clinical trials

In this video, the team from University College London Hospital (UCLH) talk about the possible advantages and disadvantages of taking part in a clinical trial.

Before you join a clinical trial, you are given a patient information sheet that describes the possible risks and benefits of taking part. However, there is no way of knowing exactly how a treatment will affect you.

The trial team is not allowed to try to persuade you to take part in a clinical trial. They have to give you all the information they have and tell you all the possible risks of taking part in the trial. It might feel as though they are trying to talk you out of participating, but it’s important you know what the trial could mean for you.

Potential advantages of taking part in a clinical trial

Most of the advantages of taking part in a clinical trial are linked to receiving good medical care. This includes access to expert staff, good quality information and careful follow-up. Clinical trials can also provide you with:

• Access to expert support and advice about the trial procedures and treatments: Doctors and nurses following the trial protocol act on the most up-to-date information about someone in your situation. You also have access to an experienced research nurse or a clinical nurse specialist with an interest in research. They can explain the trial to you and help you discuss any worries with your medical team.
• Close monitoring: Clinical trials pay particular attention to side effects (unwanted effects of a medical treatment) and your response to treatment. You may have more tests than usual to see how you are responding to the treatment.

“The whole treatment is so closely monitored and I see the research nurse every time and have neurological tests to keep an eye out for reactions. The doctors also give me a full examination and discuss how everything is going. I also have blood tests before the next treatment to ensure I am fit enough for the next dose. My care before the clinical trial was outstanding, but this feels like another level.”

Andy, who is taking part in a trial for follicular lymphoma

• Longer follow-up: You might be followed up for longer than usual because the trial team wants to know what happens with your health in the long term.
• Access to the latest treatments: Many clinical trials provide you with an opportunity to have a treatment that is not available outside the trial. They can also offer access to another treatment when all standard options have been tried.
• Access to information: For a trial to be approved, participants have to be given good quality information about the treatment involved and the possible risks and benefits of the trial. You are likely to receive more written information than you would with standard treatment. The trial team are available to answer your questions.
• Helping others: Taking part in a clinical trial may help people with lymphoma in the future, even if the trial doesn’t benefit you directly.

“As someone currently undergoing treatment as part of a clinical trial, I would recommend to anybody to consider it as an option if it is a possibility for you.”

Katie, who took part in a trial for Waldenstrom's macroglobulinaemia

Read more of Katie’s personal story, where she describes her experience of taking part in a clinical trial. You can also hear Katie talk about her experience on this Lymphoma Voices podcast.

Potential disadvantages of taking part in a clinical trial

There are possible risks involved in taking part in a clinical trial. Your doctor or research nurse can discuss any concerns you have to help you decide whether a clinical trial is right for you.

Some things you should consider include:

• Uncertainty about the outcome: Clinical trials are set up to answer questions. No one knows for sure what will happen. It’s possible you might be in a treatment group that doesn’t do as well as expected, or you might get unexpected side effects. There is more uncertainty in early phase trials, where less is known about the treatment’s effects than in later stage trials. Phase 1 trials are usually only open to people with no other treatment options.
• No choice of treatment: You and your doctor might not get a choice in what treatment you have. If the trial is blinded, you won’t know what treatment you are having. Sometimes your doctor won’t know either (double-blinded trial). There are some things to remember though:
  • You might be disappointed if you are in the control group (the group that the new treatment is being compared to). However, the control group is given the best standard treatment available and it might be just as good as or even better than the new treatment.
  • If it becomes obvious one group is doing much better than the other, the trial might close early and everyone might switch to the better treatment if possible.
• Extra hospital visits and tests: Some people find these reassuring but you might find them inconvenient. Discuss the risks of any extra tests with your medical team (for example, extra scans can increase your exposure to radiation). These risks are assessed when the trial is designed, but it is important that you are comfortable with them.
• Worrying about information you are given: Taking part in a trial means dealing with a lot of information. Talk to your medical team if anything is troubling you or you find the information difficult to understand.

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What questions should I ask?

If you are interested in taking part in a clinical trial, you should be given time to ask any questions you might have. It might be helpful to note down your questions to take with you when you see your consultant or nurse. It can be useful to bring someone with you to the appointment, such as a friend or family member. They can be there for support, but also to ask any questions you may have forgotten and remember the information you are given. 

Health professionals are used to answering questions, and trials can be difficult to understand. Ask any questions you might have and don’t hesitate to ask your medical team to explain something in a simpler way. Here are some lists of suggestion questions  that you might like to ask.

Questions about the background of the trial

• What are the aims of the trial?
• What is known about the trial treatment?
• What are the possible advantages and disadvantages of taking part in the trial?
• What treatment will I have if I don’t take part in the trial?
• How do you know the trial is safe?
• Will the trial take longer than standard treatment?
• Can I sign the consent form as soon as I receive the information?

Questions about what happens during the trial

• What happens during the trial?
• What will happen if I change my mind about taking part?
• Will I have more tests than I would in routine care? If so, why?
• Will I have to answer questions about how I am feeling? If so, how many? How often?
• How will the trial affect my day-to-day life?
• Is there anything I should or shouldn’t do while I am taking part in the trial?
• Can I take my usual medications?
• Will my travel expenses be paid?
• Who will be responsible for my care?
• What will happen if my lymphoma gets worse while I am in the trial?

Questions about your treatment if you are on a clinical trial

• Will I know what treatment I am having if I take part in the trial?
• If I was in remission before the trial and I relapse, will I be able to revert to conventional treatment?
• Does the trial use placebos?
• What are the possible side effects of the trial treatment?
• Can I have standard treatment at the same time as taking part in a clinical trial?
• Where will I have treatment?
• If the trial treatment isn’t at a local hospital, can I have the pre-trial tests done locally?
• Will I have to stay in hospital during the trial?
• How often will I have treatment?
• How many hospital visits will be involved?

Questions about what might happen after the trial

• What treatment can I have if I leave before the end of the trial?
• If I benefit from the treatment, can I carry on with it after the trial ends?
• When will the trial results be published?
• How can I find out the trial results?
• How long will the follow-up period be?
• What will follow-up involve?
• Will the trial affect my options if I need further treatment? If so, how?

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Where can I find out more about clinical trials?

If you have further questions and would like to find out more about clinical trials, you might find our other resources helpful:

• Information about clinical trials
• Searching for a trial that might be suitable for you on our Lymphoma TrialsLink
• Information about drug development, approval and funding
• Videos about clinical trials
• Personal stories of people who have taken part in a clinical trial
• Information about your medical team.

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Frequently asked questions about clinical trials

Will I be paid for taking part in a clinical trial for lymphoma?

No – in most cases, if you take part in a clinical trial, you won’t be paid for it. However, some trials might reimburse you for expenses, such as for travel, accommodation or refreshments. Ask your trial team about this. You don’t have to pay to take part in a clinical trial.

Will I be covered by insurance?

Clinical trials must have insurance to cover the people taking part. Ask your study team for more information about this. If you have or need to take out any personal insurance, for example travel insurance, life insurance, income protection or health insurance, you will usually need to tell the insurance company that you are being treated as part of a clinical trial. It could affect what the insurance company will cover.

Will my information be confidential?

Personal and medical information about you remains confidential. If you are taking part in a clinical trial that is running at a different hospital to your local one, your medical team will need to share information with staff members there. The sponsor of the trial (for example a pharmaceutical company) and the authorities that regulate the trial can look at your medical notes, but they are also bound by confidentiality agreements. Information about you that is collected and recorded as part of the trial has a code reference attached to it instead of your name. Your information won’t be taken from your hospital without being made anonymous.

Can I choose my treatment?

In most cases you can’t choose your treatment.  The treatment is set out in the trial protocol. You are given information about the different treatments in the trial before you enter. In most cases you are told what treatment you are having. Occasionally a trial is ‘blinded’, which means you won’t know what treatment you are having in the trial, or ‘double-blinded’, which means neither you or your doctor know what treatment you are having.

What should I do if I have concerns about my treatment during a trial?

You should be given contact details for people you can speak to if you are unhappy about your care during the trial. If you don’t have these contact details, ask your trial team for them.

Can I take part in a trial that isn’t running at my local hospital?

You might find out about a trial that is not available at your local hospital. If you would consider having treatment at a different hospital, you could ask your medical team about being referred. If you are referred to another hospital, your medical team will need to share information with staff members there. Think about the practicalities of being treated at another hospital, particularly travel and accommodation, including for friends or relatives who might stay with you or visit you. Some trials will help with practical arrangements for your travel and accommodation, and some might reimburse you for these costs, but the trial team will be able to give your more information about this. 

Can I take part in a trial even if the standard treatment options are available to me?

Yes – clinical trials are not only for people who have no more standard treatments available to them. Talk to your medical team if you are interested in taking part in a clinical trial. You could ask them if there is a trial that might be suitable for you.