Today’s research is tomorrow’s treatment
How do I get on a clinical trial?
The best way is to ask your consultant/oncologist about accessing a trial. If you are
willing and able to travel, let your consultant know and ask them to look further afield
for a suitable trial. You might find there is a suitable trial in a nearby city. Often the
clinical trials that metastatic patients need are funded by pharmaceutical companies,
and often they will pay your travel expenses so you won’t be out of pocket.
Finding an up-to-date listing for MBC clinical trials has always been a challenge in the
UK. METUPUK have been creating a listing for patients since 2018. It is updated
monthly from a number of sources that clinicians also use. We have recently
converted the listing into Microsoft Power BI so that it is interactive dashboard.
Tips for using the dashboard:
- It’s slightly easier on a laptop than mobile due to the size of information you are
interacting with. - You can zoom in and out on the map using you mouse.
- By selecting a ‘bubble’ location on the map, the list of trials and bar chart split will filter to only show trials for that location.
- If you click something and want to reset the dashboard back, just click the bubble, trial name or bar chart line again.
Our dashboard combines trial information from Clinical Trials.Gov, Cancer Research
UK, Be Part of Research and the ISRCTN Registry. Last update January 2024
What Are Clinical Trials?
Clinical trials are research studies that involve people. Through clinical trials, doctors find new ways to improve treatments and the quality of life for people living with disease.
Clinical trials are the final step in a long process that begins with research in a lab. Before any new treatment is used with people in clinical trials, researchers work for many years to understand its effects on cancer cells in the lab and in animals. All the drugs we use day to day have gone through the trials research process.
For those of us living with metastatic breast cancer, clinical trials are a very important option to think about. Many patients believe that they will be given a placebo on a clinical trial, but when you have metastatic disease you will always be given, at a minimum, the standard treatment. Clinical trials also have exclusion criteria – sometimes the criteria relates to numbers and types of treatment you have had or where the cancer is in your body. If you find a trial you are interested in, it is best to speak to your consultant for expert advice.
What are the benefits of taking part in a trial?
- You will have access to a new treatment that is not available to people outside the trial.
- The research team will watch you closely and you get a high standard of health care and support.
- If the treatment being studied is more effective than the standard treatment, you may be among the first to benefit.
- MBC clinical trials often involve ‘targeted’ treatments / drugs, with fewer side effects than traditional chemotherapy
- The trial may help scientists learn more about cancer and help people in the future.
What are the risks of taking part in a trial?
- The new treatment may not be better than the standard treatment.
- New treatments may have side effects that doctors do not expect
- You may be required to make more visits to the doctor than if you were receiving standard treatment
- Even if a new treatment has benefits in some patients, it may not work for you.
How do I get on a clinical trial?
The best way is to ask your consultant / oncologist about accessing a trial. If you are willing and able to travel, let your consultant know and ask them to look further afield for a suitable trial. You might find there is a suitable trial in a nearby city. Often the clinical trials that metastatic patients need are funded by pharmaceutical companies, and often they will pay your travel expenses so you won’t be out of pocket.
There is also a UK clinical trials database – Be Part of Research – which is updated on a regular basis. If you want to see an up to date list of the metastatic breast cancer trials that are currently running in the UK check the NIHR website.
Questions to ask about the Trial
- What is the purpose of the trial?
- Why do the researchers believe that the treatment being studied may be better than the one being used now?
- What kinds of tests are involved?
- How will the doctor know if the treatment is working?
- How will I be told about the trial’s results?
- How long do I have to make up my mind about joining this trial?
- Who can I speak with about questions I have during and after the trial?
- Who will be in charge of my care?
- Is there someone I can talk to who has been in the trial?
Questions about Risks and Benefits
- What are the possible side effects or risks of the new treatment?
- What are the possible benefits?
- How do the possible risks and benefits of this trial compare to those of the standard treatment?
Questions about Your Rights
- How will my health information be kept private?
- What happens if I decide to leave the trial?
Questions about Costs
- Will I have to pay for any of the treatments or tests?
- Are my travel expenses covered?
Questions about Daily Life
- How could the trial affect my daily life?
- How often will I have to come to the hospital or clinic?
- Will I have to stay in the hospital during the clinical trial? If so, how often and for how long?
Questions about Comparing Choices
- What are my other treatment choices, including standard treatments?
- How does the treatment I would receive in this trial compare with the other treatment choices?
- What will happen to my cancer without treatment?