No, if you have lymphoma you won’t usually be paid for taking part in a clinical trial on lymphoma. However, in some trials you can be reimbursed for travel expenses and refreshments. Ask your trial team about this. You don’t have to pay to take part in a clinical trial.
No – there are trials for people in different situations. Clinical trials can offer access to experimental treatments to people who have already had the standard treatments and need more treatment. However, they are also carried out for other reasons. They might aim to improve standard treatment for people having their first treatments. They might be testing if a change to standard treatment can reduce side effects or improve outcomes. There are trials that don’t involve treatment at all, eg they might give researchers access to your samples and information about your response to treatment so they can learn more about lymphoma.
You might find out about a trial that is not running at your hospital. Discuss this with your medical team. You might wish to ask your doctor about being referred elsewhere if treatment at a different hospital is something you would consider. If you are referred to another hospital, your doctor will need to share information with staff members there. Think about the practical implications of being treated at another hospital, particularly travel and accommodation costs.
Only a small proportion of people with lymphoma are treated as part of a trial. There are lots of reasons for this. There are only a small number of trials running at any one time. Trials have strict eligibility criteria to make sure participants are safe and that the results are scientifically valid. Sometimes, you might be able to travel to another centre to take part in a trial. However, there is not a suitable trial for everyone at any one time. Your doctor can talk to you about your options if there isn’t a trial you can take part in.
A trial team will look after your care during the trial. The study investigator is usually a consultant at your hospital and will oversee your care as part of the trial. You will also have access to experienced research nurses or a clinical nurse specialist with a research interest. These nurses are dedicated to the support of patients involved in the clinical trial. They can discuss any worries or questions you might have.
Treatment trials are carried out in phases. The phase of a trial reflects how much is known about a particular treatment.
You can’t usually choose your treatment. The treatment is set out in the trial protocol so you are given information about the different treatments before you enter the trial. 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.
A placebo is a dummy treatment. Clinical trials for cancer rarely involve giving a placebo alone. In a lymphoma trial with a placebo, you most often have standard treatment together with either a placebo or a new drug. This is done because knowing what treatment you are on could influence your or your doctor’s expectations about it. This could affect the results of the trial.
Lymphoma has to be at least a certain size so changes can be detected, for example on scans. The requirements vary from trial to trial according to the type of lymphoma under investigation and the tests used. Most people have measurable disease. A few people may have lymphoma present that is so small it is difficult to measure accurately.
You should be given contact details for people you can speak to if you are unhappy about your care during the trial.
Personal and medical information about you will remain confidential. The sponsor of the trial (for example a pharmaceutical company) and regulatory authorities can look at your notes but are also bound by confidentiality agreements. Information about you that is collected and recorded as part of the trial will have a code number attached to it instead of your name. Your information won’t be taken from your hospital without being anonymised.
Clinical trials must have insurance to cover the people taking part against anything going wrong. 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.
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 would not happen without your knowledge. In some trials, you can opt out of having your samples stored. Some trials only require samples for research and do not involve treatment.