This post coincides with International Clinical Trials Day which is celebrated each year around the world, on or around the 20 May to commemorate the day that James Lind started his famous trial. This week, across the Barts Health NHS Trust site a number of activities are taking place to educate, raising awareness and celebrate some of the brilliant research going on in our area. Our contribution to this shares the experience of taking part in a clinical trial either as a person with MS, an MS researcher and a MSologist.
The patient perspective:
“Like many people when first diagnosed with MS there is the inevitable “why me” but also a realisation of helplessness due to a lack of drugs to fight, slow down or even just simply delay PPMS. The only thing I could do was to lose some weight and keep myself fit and with that in mind I started immediately and continue now weekly physiotherapy sessions, but I was keen to do more. This lead me to look at drug trials to fight back – take the war to the enemy!
Since then I have been involved in 3 drugs trials over a number of years and given that I have few if any allergies, no needle fears (important believe me, given the number of times that you need to give blood!) and time on my hands I guess I am a reasonably good trials patient. In addition to this there is also an altruistic motive, I am keen to help develop drugs for all pwMS and also ensure that that those clever people developing drugs get the opportunity to trial them. In return I get regular health check ups and access to the medical staff at the Royal London, which I consider to be a plus factor and I also am now on very good terms with most of Prof G’s team! Additionally you also have the opportunity to maybe get a drug ahead of the general population and test its efficacy.
There are of course occasions when you really do not want to spend time in a hospital and some trials have been a little more demanding than I would necessarily wish, but overall I would suggest to all pwMS to sign up for a trial if it convenient for them to do so – you never know what might come of it.”
The researchers perspective:
“I am Lucia and I work in the Lab to test the trial samples – this helps to determine if the trial drug is effective. I also take care of all associated paperwork, as everything in a trial needs to be documented: this is important for the participants’ safety as well as for the reliability of the results.
The vast majority of trials nowadays are testing a new drug against the best current one and not against a placebo: this eliminates the risk of going without treatment for the duration of the trial. To enrol in a trial the clinician must give you full knowledge of the possible risks and benefits; your agreement is given by signing an ‘Informed Consent’ form. Moreover, you can withdraw from a trial at any time without the need to give a reason.
To run a trial we have to adhere to national and international regulation and must have the approval of an independent ethical committee; Lab and documentation are also regularly inspected by regulatory bodies. As much as it is sometimes exhausting and frustrating for me to keep on top of all these piles of paperwork I feel all of this is essential to ensure the trial participants’ wellbeing is the first priority. It is also important to safeguard the scientific value of the trial – in other words, there must be strong scientific data to prove the drug is indeed effective.
What from outside might look like a lot of unnecessary red tape it is in my opinion a guarantee only really improved and beneficial treatments will reach the clinic. I enjoying working in clinical trials as the results of the analysis I perform on samples could lead to better therapies being available to people with MS.”
The clinicians perspective:
“As a clinician, doing a neurological diagnosis is usually challenging but always rewarding. Unfortunately the lack of effective treatments for neurological patients could be a huge problem. Therefore, it is important to seek for innovative and more effective therapies to allow patients affected with neurological disorders to improve their lives on a day-to-day basis.
Clinical research, especially clinical trials, has taught me the importance of searching for new and more effective therapies for people suffering from devastating neurological disorders such as MS. Being part of clinical research projects is one of the most rewarding activities I have experienced in my medical career. As a clinical research fellow, I am involved in developing research objectives, projects and proposals, helping in the conduction of internal and collaborative research projects, and disseminating research findings through scientific publications and conferences. The objective of our clinical research is to find more effective therapies for people with multiple sclerosis.
Apart from the technical work we have to do, I always try to have some time to chat with people with MS and hear their necessities, this is priceless as patients have little time during the normal NHS appointments to talk about more general problems that are important during the time of designing research projects. Besides, some patients are opened to share some personal gifts they have, like Sam who shared with me poetry he writes in his blog:
“I try daily to always be happy, I know life is hard but it’s best to go throw it with sum1 so lively…” Sam*
This is very gratifying!
You can find out more information about the different events taking part across Barts Health here. We are also working to update our trials tab on this blog.