Research needs you!
New writer Heiko Decosas of the CIHR Canadian HIV Trials Network (CTN) with the first of his regular blogs on PositiveLite.com. Today he talks about the work of the network and what clinical trials are about.
Research needs you! That’s the tag line of a poster we put about enrolling CTN clinical trials in Canada. It really is the truth. Clinical trials have been a critical part of advancing HIV treatments, but these advances would not amount to much if it were not for the thousands of people who have given significantly of themselves to participate in clinical research in Canada.
In the early to mid 1990s the CTN worked closely with pharmaceutical companies in drug development. Testing new drugs was the primary role of clinical trials in Canada at the time. Finding qualified volunteers for trials was not difficult as people were often eager to get early access to potentially life saving treatments.
The situation in Canada has changed significantly. As access to treatment has improved, the research agenda has shifted. Clinical trials at the CTN still test the safety and effectiveness of new drugs and medical interventions; however increasingly researchers have also turned to look at more subtle refinements of existing treatments, new prevention technologies, managing complex health issues such as co-infections, and learning how to work with and care for vulnerable populations and an aging population of people living with HIV.
Trials at the CTN are now typically public interest studies funded through research grants from agencies such as the Canadian Institutes of Health Research. They are led by individual researchers and connected to other clinics and investigators across the country through our Network. There are currently 35 clinical sites and over 80 signed CTN investigators across Canada. The CTN provides independent researchers with the resources they need to conduct meaningful trials at an appropriate scale.
A unique aspect of CTN endorsed trials is that all the investigations require a community stamp of approval provided by the CTN’s Community Advisory Committee. The nine-member committee brings together people from across Canada who are living with HIV or representing organizations dealing with HIV/AIDS. Members review clinical trial proposals and informed consent forms and make recommendations to the principal investigators conducting the research as well as CTN’s scientific oversight body, the Scientific Steering Committee. This process is key to improving communication between researchers and community representatives, and ensures that the proposed research is relevant and of interest to the community.
CTN clinical trials answer many different research questions. A trial is essentially a carefully designed experiment that allows researchers to assess whether the benefits of a particular treatment or intervention outweigh its risks, and if it will improve the lives of people living with HIV.
In partnership with the Canadian AIDS Society, we put out a handbook called Clinical Trials: What you need to know. The aim of the handbook is to explain how and why trials are conducted, how people can join a trial, and what they can expect if they decide to participate. The handbook was written in plain language and provides a wealth of basic information for understanding trials. Chapters cover the different types of trials, decision-making, responsibilities and participant rights, benefits and risks, as well as the stages of trial participation. One of the primary themes of this handbook is that people living with HIV play key roles in research, as advisors to the CTN and as volunteers in trials.
In terms of safety it is important to know that all clinical trials are regulated by Health Canada. Health Canada follows Good Clinical Practice (GCP) guidelines developed by the International Committee of harmonization. The CTN Scientific and Community advisory boards also review CTN studies for safety and trial investigators are also required to have their proposals reviewed by various independent and institutional Research Ethics Boards depending on the enrolment sites of the study.
If you are living with HIV and interested in clinical trials, talk to your health care providers or local AIDS organizations about possible alternative treatments. We collaborate with CATIE to publish currently enrolling trials on both organizations websites.
About the author: Heiko Decosas is a Communications and Information Officer with the CIHR Canadian HIV Trials Network. He has experience in health policy research, knowledge transfer and exchange, broadcast media, and new media production. He currently lives in Vancouver BC.