Clinical trials are essential in the development of new drugs for lymphoma, but can be a difficult subject to fully understand. Here we try to answer some of the questions we hear from our community.

Who organises clinical trials?

Clinical trials are organised by a group of researchers and doctors known as a research team. These are the people who have decided on the question that is going to be tested, and the plan of how to do this. A number of hospitals over several countries may take part and trials often have several testing sites. Trials will have a sponsor who is in charge of the overall running of the trial and has a legal responsibility to make sure it is conducted safely. This can either be an individual or an organisation.

How can I find out what trials are available?

In many cases your specialist team will tell you about a trial they think is suitable for you. You can also ask your medical team about relevant trials or search for trials yourself. Our clinical trials database Lymphoma TrialsLink has an up-to-date list of all the lymphoma trials currently open in the UK. Other places you can look include Cancer Research UK, Blood Cancer UK and The Lymphoma Coalition.

Can anyone take part in a clinical trial?

Each trial has strict criteria as to who can enter that specific trial. This is known as the eligibility criteria and may include your type of lymphoma, age, previous treatment received and other medical problems. This is to ensure that the trial is safe for all patients.

How do I know if a trial is suitable for me?

If you have seen a trial for your type of lymphoma and stage of treatment and want to know if you could take part, the first step would be to discuss it with your specialist team. They can look at the eligibility criteria to see if you would be able to enrol and identify a trial site if the trial is not open at your local hospital.

How do I get on to a clinical trial?

If you have found a trial that you think you may be suitable for and your specialist team agrees, they will need to refer you to the research team. This is called a medical referral. Members of the research team will then go through a formal screening and consent process with you.

Are trials just for people who have run out of other options?

Clinical trials are offered at all stages of the treatment pathway, from those who have not received any treatment to those who have relapsed on multiple occasions.

Can I access trials abroad?

If you have found a trial in a different country which you think it suitable for you, then you may be able to take part. This does not often happen because it can prove expensive as you might have to pay for the treatment as well as the travel expenses. It is also important to remember that trials outside of the UK are not always regulated to the same strict level. If you do decide to apply to enrol, it is important to check with your specialist team that you have a full understanding of what is involved.

Are you more closely monitored if you are on a clinical trial?

For some trials you are monitored more closely. You will often need to have more check-ups and investigations to monitor your response and any possible side-effects. This may mean more blood tests and scans, or appointments to answer questions.

Will I need to go to a different hospital for treatment?

This depends on the trial and where it is taking place. Each trial has one or more hospitals that are taking part. If your usual hospital is not one of these then you would have to travel to a different hospital. It is important to consider the extra time and expense that this may cause. Some trials will pay for travel expenses.

Will going on a trial mean I can’t carry on seeing my current team?

For many trials the research team running it will be in charge of your treatment and monitoring. Sometimes you will still have input from your usual medical team.

Will I be paid for taking part in a trial?

In most cases, no you will not receive any money for your participation. However, generally you will be offered expenses for travel or accommodation costs.

Can I choose which treatment I have in the trial?

In trials comparing a new treatment to other options people are randomly allocated to a treatment group. This is called a randomised trial, and you cannot choose the treatment that you have. This makes sure that the groups are similar in all other ways. It is done by a computer and in some cases the people in the trial may not know what treatment they are having. This is called a ‘blind study’. A ‘double-blind study’ is where the person in the trial, and the person giving them the treatment doesn’t know what it is. Some trials are not randomised, but in most cases you are still not able to choose the treatment you receive.

Will I be able to continue treatment once the trial ends?

In some trials the treatment will continue to be funded once the trial has ended but this is not always the case. It should be made clear to you before you enrol as to what happens at the end. It may not always be necessary to continue the treatment after the completion of the trial.

Can I leave the trial if I change my mind?

You can withdraw from a trial at any time, and you do not need to give a reason for your decision. The research team likes to know what has prompted your decision as they can use this information within the trial results, but you do not have to give a reason if you don’t wish to.

With thanks to Professor Andy Davies and Dr Wendy Osborne for reviewing this article.