Huntington’s Disease Questions and Answers What’s the difference between a trial and a study? Clinical trials are investigating the use of new drugs for HD, and usually include people who have HD symptoms. Studies are looking at people with or at risk for HD by non or minimally invasive testing (movement tasks or blood samples) to give researchers information about HD before HD becomes obvious to the person. One goal of HD research is to aim treatment at times before the disease becomes a problem. If I sign up for a trial or study, do I have to get tested? I don’t want to know my HD status. No. For many studies, you do not need to know your HD status and any information is subject to strict privacy laws and doctor-patient confidentiality. The choice to know one’s HD status is respected, understood, and taken very seriously. I know my HD status -is it ok to tell everyone? This is a matter of choice, but, currently, there are no laws in Canada preventing genetic discrimination by insurance companies and/or employers. There are some laws in the US, but they are not optimal -know your country’s legal rights before disclosing your HD status. How do I know I will not be a “guinea pig” in an HD trial or study? Ironically, guinea pigs are no longer used in lab studies (we use mice). Trials are studies are intensely vetted and supervised by ethics committees and the FDA to assure that no harm is done to the patient, and that privacy and comfort for patients is not violated. These groups exist only to protect patients. How does my blood sample help HD research? Blood is a mix of cell types that can be separated from the serum. These samples allow us to look for potential markers of disease (biomarkers), and allow us to gain information about the disease in real human cells, not just models of disease from animals like mice. These samples will tell us about very subtle changes in someone with HD years before they get any obvious disease. This approach is far more likely to be successful than attempting to treat disease once it has affected someone. Without these samples, we can have no real idea what is going on in real HD cells from real people.