You can choose to play a role
The Huntington Society of Canada (HSC) recognizes that some individuals at-risk for HD may choose not to participate in clinical trials, as genetic information is not protected in Canada. Genetic test results can be used to the detriment of an individual by insurance companies and employers in Canada. The Society is advocating for genetic fairness in Canada, however, at this time, protection is not in place. Choosing to participate in clinical trials is a personal decision; the Society encourages those who are interested to consult with their HD Resource Centre Director or Family Service Worker to understand all aspects of this decision.
HSC continues to partner with leading organizations that are conducting and preparing for clinical trials. Individuals have played an essential role in all aspects of Huntington disease (HD) research. It was family history records that guided the discovery of the HD gene mutation and blood samples from families around the world that made genetic research possible. HSC bridges the relationship between researchers and individuals by educating Canadians on the importance of the clinical trial process; how they can get involved; and why their participation is so crucial. It will be through clinical trials that new research breakthroughs will be moved from discovery to the HD community.
If you would like to participate in clinical trials, Enroll-HD will facilitate your involvement when they are available in your area. Enroll-HD is a platform that allows health-care professionals, scientists, and families affected by HD to work together towards a better understanding of HD and identify effective treatments. Their objective is to create the world’s largest database for clinical research on HD, eventually including information from as many as 20,000 people in 33 countries. To learn where you can participate in Enroll-HD in Canada visit our new Clinical Trials Map and for more information on Enroll-HD visit www.Enroll-HD.org to learn more and to find the closest site for you to participate.
To move clinical trial research forward more people are needed. For a clinical trial to be successful a wide participation rate is required in order to find meaningful results. Canadians are quickly becoming the highest per capita participants in HD clinical trials in the world, but we are not there yet. HSC plays a key role in bridging the relationship between researchers and individuals by educating Canadians on the importance of the clinical trial process; how they can get involved; and why their participation is so crucial. It will be through clinical trials that new research breakthroughs will be moved from discovery to the HD community.
Clinical Trials in Canada
There are special precautions that are taken when researchers conduct clinical trials with drugs in Canada. In Canada, drugs are authorized for sale once they have successfully gone through an extensive drug review process. This process falls under the mandate of Heath Canada’s Health Products and Food Branch (HPFB). This branch is responsible for the approval process for pharmaceutical drugs, vitamins, vaccines and medical devices from pre-clinical trials to post market surveillance, inspection and investigation. Throughout the process, the safety and well being of Canadians is the paramount concern.
The intent of a clinical trial is to research and gather information on the drug’s dose, effectiveness and safety in humans. Trials are undertaken with informed and consenting human subjects according to good clinical practices and ethical guidelines. This provides a controlled environment where the procedures for drug administration and the evaluation of the results are closely monitored.
Essentially, the government, offices of research ethics, and researchers themselves work very hard to protect the people who volunteer to participate in research. All avenues, from ethical reviews to the well being of individuals, are kept in mind. Should there be any adverse effects of participation, the research can be stopped immediately. As well, if at any time an individual decides that they can no longer participate, they can voluntarily withdraw.
The importance of participating in clinical trials
When you take part in a clinical trial, you help others by advancing medical research. If you have a disease, there could be personal benefits. You may get early access to a new promising treatment. The treatment may provide benefits to your condition and may improve your quality of life. You may also get additional access to expert health care because of the time you will spend with the research team involved in the study.
Each research study is designated to continue for different amounts of time: from years or a few days. You can withdraw from research studies at any time as your life circumstances change. People who have participated in research in the past say only you can decide if this is the right decision for you, but the information that you may be adding to the knowledge of HD can be invaluable.
Clinical trials are undertaken with informed and consenting volunteers, and are conducted according to procedures. The evaluation and results are closely and carefully monitored.
Everything is done to protect the people who volunteer to participate in research. The well-being of the individual is considered paramount. In the unlikely event of an adverse reaction or if a concern is expressed, the participant can withdraw at any time.
Learn more about clinical trials by reading What is a clinical trial?