CANN - 55th Annual Meeting and Scientific Sessions

The Neuro is a unique institution with a Clinical Research Unit (CRU) set within a neurological hospital. In the last 20 years, the CRU flourished from a small unit into a leading center with over 125 trials annually. It is one of the largest establishments of its kind in Canada, focusing in all areas of neurology. With the burden of neurological disorders as the leading cause of disability and death worldwide, our vision, is to make all neurological and rare diseases treatable. When treatment options are limited, clinical trials offer hope and meaning for patients, allowing them access to new, potentially promising therapies while contributing to science and improving peoples’ quality of life. An added advantage is close follow-up with world-renowned neuroscience healthcare professionals during their enrollment. Nevertheless, joining a trial may be burdensome since it is a commitment of time and energy, and can involve risks.

The purpose of this presentation is to introduce the CRU and to highlight the clinical research nurses’ contributions in supporting patients and families through diagnosis, referral, screening, investigational treatment and study termination. Clinical trials are complex, involving a multidisciplinary team. At the heart of this team are the patients and caregivers. Captivated by their resilience in the face of serious illness, taking part in their journey helps us better understand their experiences, which in turn can inform better study design. Although not operating in the traditional clinic setting, the research nursing role is a vital piece of the team, where human subject protection is at the core of all that we do, while balancing neurological patient care, bioethics, respecting research protocols and data integrity.