If you are part of Enroll-HD, you may have the chance to join other clinical studies and clinical trials. The words mean slightly different things (and not everyone uses the words in the same way). Trials usually test either a new drug or a non-drug therapy such as exercise or diet for HD. Studies, on the other hand, don’t test a treatment. They might investigate a better way to measure the changes caused by the disease or explore factors that influence the health of people with HD.
If a scientist or drug company researcher has a new idea or a new drug to test in HD, the investigators at each local site can help, by looking through the Enroll-HD database for people who have already said they are willing to be contacted for an outside study. If you have agreed in your consent form to be contacted, and you have the right characteristics for the study, your neurologist or another person at the site where you get care will contact you with a description of the research project to see if you are interested in joining. Nobody outside your local site, where you go for Enroll-HD visits, will be able to see any identifying information such as a name, address or birth date.
Volunteering is completely up to you and is always your choice. Whatever choice you make, it won’t affect your care—you can still be part of Enroll-HD even if you don’t want to join other studies or trials.
This story was originally published in the March 2014 issue of Enroll!