AL amyloidosis // 20th May 2020
Today is International Clinical Trials Day, an annual event to raise awareness of clinical trials. First celebrated in 2005, it aims to encourage patients, carers and the public to get involved in research. We caught up with Director of Research Sarah McDonald to tell us more about clinical trials.
What is a clinical trial?
Clinical trials are research investigations in which patients can volunteer to take part. They test new types of treatment or care, aiming to find out if the new treatment is safe and effective for patients. There are different types and stages (or phases) of clinical trials and each trial is designed to ask and answer specific questions to determine which treatment(s) should become available for patients.
Why does Myeloma UK invest in clinical trials?
Myeloma is treatable but not curable, and currently, 50% of patients will survive their disease for more than five years. Without clinical trials there will be no new treatments and it is important is that rare cancers, like myeloma, don’t get left behind. Low numbers of patients doesn’t mean it should be a low priority. Myeloma UK has successfully launched ten clinical trials in the last nine years giving over 1100 patients the chance to receive innovative treatments. We are committed to keeping myeloma at the forefront of research by investing in innovative clinical trials to ensure myeloma patients live longer and have the best possible quality of life.
Why should patients consider joining a clinical trial?
Without clinical trials there would be no data and evidence to support access to new treatments. By joining trials patients provide the data which shapes future treatment whilst getting the opportunity to access innovative treatments up to ten years before they are available through the NHS. Patients should consider joining any: trial, study, control group they’re asked to. By consenting for your samples, results, or data to be used, you are adding to the pool of information which will turn into evidence and provide an answer sooner.
How has the COVID-19 pandemic affected clinical trials?
In April it was announced that all non-COVID-19 clinical trials would stop recruiting new patients and new no new trials would be opened. The National Institute for Health Research (NIHR) Clinical Research Network has confirmed to us that there are over 3000 national trials on pause. This means clinical trials are not an option for patients looking for new and different myeloma treatments.
Restarting myeloma clinical trials will be a challenge; trials cost money to establish. The logistics of re-starting ongoing trials isn’t like flicking a switch; conversations are starting about prioritisation, finance, patient safety, how breaks are dealt with in terms of data, samples and patient care, alongside all the governance to keep patients safe.
So, we’re waiting, watching, and talking to the Association of Medical Research Charities (AMRC) and NIHR, and we’ll be pushing for myeloma trials to open quickly.
Can patients get involved in research during the COVID-19 pandemic?
Yes, although clinical trials are currently on hold, there are lots of other ways patients can get involved in research to help us answer questions and generate the evidence we need to make improvements for myeloma patients and their families.
For example, patients can take part in online surveys like our COVID-19 patient experience survey or join our patient and carer panel to provide their opinions on future treatments or our research projects.
There may also be an option to join a COVID-19 clinical trial looking to find the best way to treat COVID-19.