Have you ever wondered what clinical trials are? How they work? What the potential benefits and risks are? If a clinical trial is an option for you or someone you know we hope that a new website called Itstartswithme.ca (Cacommenceavecmoi.ca) will answer a number of these questions for you, and help you make an informed decision about clinical trials. The website also includes some questions to ask if you’re interested in becoming a participant as well as what to expect, and a large glossary of terms.
ItStartsWithMe.ca was created by the Network of Networks (N2), a Canadian organization that represents organizations that carry out clinical research (which includes clinical trials)1. N2 helps organizations to share best practices and to facilitate more efficient and high-quality research, integrity of clinical practices and accountability. To date, N2 has mostly been focused on clinical research professionals, however the new website represents a start to N2’s interactions with the public about clinical research. We hope that this site helps start more of a dialogue about what clinical research is and why it is important.
ItStartsWithMe.ca was originally envisioned and planned by the Clinical Trials Education and Awareness Committee of N2. I joined this Committee as a project manager in October 2014, and thought this project was perfect for me- given that I am also a person who lives with rheumatoid arthritis and know a number of people who have been in clinical trials. My project manager role was to ensure that the website was developed and that people would understand it, and want to use it as a trusted, objective resource. Initially, we reached out to a number of patients and caregivers, with ten from across Canada agreeing to join the Committee in its journey to build a website. These patients and caregivers represent different demographics and disease experiences from across the nation, and they each bring a valid perspective to which our Committee listened and continues to listen. Many of these individuals have either participated in a clinical trial or they have known a loved one who has been in a clinical trial. They have provided guidance on language, how things look, thoughts on terminology, and even shared practical tips for people who may be participating in a clinical trial. They are all supportive of the role that clinical trials play in bringing new medications, treatments, and medical devices to Canadians.
We hope that you will visit Itstartswithme.ca and find it useful. From simply learning what clinical trials are, including all of the phases, who is part of a clinical trial team, potential benefits and risks about clinical trials, as well as using the glossary of terms, we believe that the website provides a lot of useful information that is easily understandable. The individuals behind ItStartsWithMe.ca believe that clinical trials are an important part of bringing new innovative therapies to people living with illness, and want to help others see this point of view too.