Ask the Nurse: Clinical Trials

This month’s blog will focus on clinical trials as a treatment option.

International Clinical Trials Day was held last month. The annual event raises awareness of clinical trials in healthcare across the world. Clinical trials provide evidence for new and potentially better treatments. Here we answer some of the questions about trials asked on our Myeloma Infoline.

What is a clinical trial?

Clinical trials are research investigations in which patients can volunteer to take part. Clinical trials in myeloma may be designed to find better ways to prevent, detect, diagnose, or treat it or answer specific scientific questions.

There are different types and stages (known as phases) of clinical trials. Each trial is designed to answer specific questions to help determine which interventions, including treatments, are most effective for patients.

What are the benefits of taking part in a clinical trial?

Clinical trials can allow access to new treatments which are not yet available on the NHS. This can be especially valuable for patients who have had several treatments before and have fewer currently approved options left available to them.

By joining a trial, you are also helping create the evidence needed to make effective and safe treatments available to others through the NHS in the future.

Can a clinical trial cure myeloma?

For now, most myeloma clinical trials are seeking to achieve deeper and longer-lasting remissions for patients than current treatments provide. They are not offering a cure.

However, clinical trials are helping researchers and healthcare professionals learn more about myeloma and the best treatment approaches. They gather information that may improve myeloma care in the future.

Are clinical trials safe?

Clinical trials are carefully planned to make sure they are safe. In the UK, trials are closely monitored by several professional groups.

Every trial is led by a main researcher, who is often a medical doctor.

The research team running the trial also includes doctors, nurses, research coordinators and other healthcare professionals.

This makes sure that each trial meets safety, quality, and ethical standards and follows regulations. This helps to limit risk to participants.

What are the risks or disadvantages of taking part in a clinical trial?

Although clinical trials are designed to be as safe as possible, some risks do remain. For example:

  • You may experience side effects from the treatment
  • The treatment may not be effective for you, or not as effective as the standard treatment
  • Depending on the type of trial, you may be in the control group. This means you will not have the new or trial treatment. However, in the UK, patients in the control group will still receive the current standard treatment for myeloma

What are the practical implications for me?

Practical issues may make taking part in a trial more difficult. Before you join a trial, it is important to understand what these are. For example, some trials may involve:

  • Being treated at a different clinic, which could be further from your home
  • Attending more frequent appointments than usual for tests and monitoring
  • Completing regular forms, questionnaires, or diaries
  • Having extra blood tests or scans

The research team running the trial is responsible for your treatment and care during a clinical trial, although your healthcare team are still involved and can support you.

The research team will monitor you closely during the trial period and often for some time afterwards. This allows the research and healthcare teams to monitor how you respond to and tolerate the treatment.

Can I leave the trial if I want to?

Taking part in a clinical trial is always voluntary. Even after starting a trial, you have the right to leave the trial at any time, and you don’t need to give a reason.

Who can take part in a clinical trial?

Clinical trials need to make sure they involve patients that fit specific criteria. This is called ‘eligibility’.

Trials need to make sure that the patients taking part are as similar as possible. That way, if one group does better than the other, the researchers can be sure it was due to a difference in treatment.

The eligibility criteria often include things like:

  • Age
  • Type of myeloma
  • Previous treatments
  • Presence or absence of certain myeloma complications
  • Presence or absence of other health conditions (co-morbidities)

If you do not meet the criteria laid out by a particular clinical trial, you cannot take part. However, this does not mean you can’t take part in another clinical trial if you meet their criteria.

What happens to my treatment when a trial ends?

When a trial ends, it can take a while before the treatment becomes available on the NHS if it is found to be safe and effective. Sometimes more clinical trials are needed.

It is not always possible to continue the treatment you have had during the clinical trial. However, you will always be offered the best available standard treatment.

If you do not have any satisfactory standard treatment options available to you, occasionally expanded access schemes (also known as compassionate use schemes) may be available to you.

Expanded access schemes can allow you to continue accessing a treatment that is still in development, outside of a clinical trial.

If you want to explore this option, you should discuss it with your healthcare team – requests for expanded access can only be made by your haematologist.

How do I find out about trials available?

Your healthcare team are the best people to talk to if you are considering a clinical trial. They will be able to discuss which trials might be suitable for you and your circumstances and help you find out more if you want to.

You can also use the Myeloma Trial Finder to find out more about current clinical trials for myeloma and related conditions. The Myeloma Drug Tracker can be used to find out which drugs are in development and provides Horizons Infosheets with more information, if available.

Watch our Research and new treatment in myeloma Digital Infoday Session to find out more. Get in touch with us through the Myeloma Infoline on 0800 980 3332 (UK) or 1800 937 773 (Ireland) or by using the Ask the Nurse email service.

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