Insights from Clinical Trial Participants




Countless lives have been saved by clinical trial breakthroughs. With clinical trials we have been able to discover and test the effectiveness and safety of drugs that have resulted in direct improvement of patient care and illness prognosis. 

One remarkable example of trials saving lives is the story of cancer survivor Laurie Adami.

Clinical Trails Cancer Treatment Research

Diagnosed with stage IV non-Hodgkin lymphoma in 2006, Laurie’s prognosis was bleak, and her experience with several different chemotherapies even worse. After 12 years of unsuccessful treatments, Laurie was enrolled into a novel CAR-T immunotherapy trial. In CAR-T immunotherapy white blood (T) cells are taken out of the patient’s body and engineered to recognise antigens on the cancer and infused back into the patient’s bloodstream a few weeks later, targeting the cancer cells – an example of personalised medicine. 

In Laurie’s case, this clinical trial for innovative CAR-T therapy was successful, eliminating all 3kg of cancerous lymphoma from her body, and saving her life.
Due to the positive experience Laurie had, she has since devoted much of her life to raising awareness for lymphomas and for similar trial therapies which could prove lifesaving for other patients too.

CAR-T immunotherapy has since saved thousands of lives, both during the clinical trial period, and after receiving FDA approval.

While Laurie’s story is of hope, not all who are interested in finding a treatment manage to participate in clinical trials. Neucruit recently interviewed Nadia Sethi, an Amyotrophic Lateral Sclerosis (ALS) patient advocate regarding her own views on clinical trials. Over the last two years, Nadia has passionately advocated to bring more patients to trials for ALS, after losing her husband to ALS. Nadia shared her frustrations, but also her hopes for the future of clinical trials.

Initially, Nadia found no-responses and dead-ends from neurologists when seeking ALS treatments. She then turned to the US-focussed website to look for relevant trial information, and attempted to get in touch with clinicians, researchers, coordinators in order to get some advice or referrals.

The opportunities and engagement were poor so she eventually, sought hospital research team staff and contacted them too, to increase the likelihood of finding a clinical trial for ALS patients. Despite calling study centres and contacting them through their websites, few responded, and the very restrictive inclusion criteria made the recruitment and screening process “to “move surprisingly slowly.” Most alarmingly, in her research she found that only one or two ALS patients are successful recruits per site each month.

This harrowing statistics highlights the need to facilitate and streamline the administrative and managerial work clinical trials require as currently only a very small percentage of the population can access clinical trials. This poor and slow recruitment has devastating effects on the outcomes, limiting the speed at which novel therapies can be trialled, delaying life-saving treatment opportunities for those in need, and increasing the burden on patients, carers, and the healthcare system.

Nadia’s interview is a reminder of the need to advocate for clinical trials, to increase awareness and to encourage participation. 

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