“Clinical trials offer hope” Lead MND Research Nurse Theresa Chiwer

Theresa Chiwera, Senior ALS (MND) Clinical Trials Manager and Lead MND Nurse oversees the delivery of clinical trials at King’s College Hospital’s MND Care Centre.

The Care Centre is part-funded by the MND Association and is a leading centre of MND research in the UK. During her eight years in the role, Theresa has worked on 20 clinical trials and research studies. In this time, she’s seen a rapid increase in the number of trials focused on the disease.

She said: “So much is happening now in the field of MND research. We’ve gone from having one or two trials a year, to over seven at any given time. Studies are increasingly patient focused, often allowing remote visits or less frequent study visits, which increases the accessibility of clinical trials to patients.

“I’ve been involved clinically with two promising, potentially life-changing clinical trials in the past year. That’s Tofersen - specifically for patients with the SOD1 genetic mutation, and the MIROCALS trial.

“At King’s we offer all our patients the opportunity to take part in research, whether a questionnaire-based study if a patient prefers this over a clinical trial, or the option to do a biobanking study which contributes to our understanding of MND.

“I know clinical trials offer hope to our patients and their families, and this is both rewarding and humbling. In my role I get to meet the most incredible people. Most of our patients are altruistic - they participate in these trials and research studies to help others. Patients know they could be on placebo treatment. Even if they’re on the study treatment arm of these investigational drugs, there’s no guarantee the treatment will be successful.

“When patients are on a trial, they have a dedicated and responsive clinical trial team and there’s 24 hour cover in case a patient has adverse effects or concerns to report.

“Patients are also given flexible appointment scheduling, and if patients aren’t able to attend clinic visits they are offered alternative remote visits if the study protocol permits, to make it easier for them to continue on a trial.

“Of course, our hope is always to find a cure. As part of that, we need to find biomarkers which can be useful for earlier diagnosis and targeting treatment.

I’m also actively involved in looking for ways to improve the research service we provide, participating in projects to improve clinical care and quality of life, as well as support patients and their families.