Nine
years ago, when I first learned that I had tested positive for Huntington's
Disease, I was very interested in participating in clinical studies. At the
time, I did quite a bit of research, and found several sites that are kept
updated. The Huntington
Study Group website always has updated information on trials that are
presently enrolling, as well as the Clinical
Trials.gov site. When you find a study that sounds like one for which you
might be interested and qualified, click on the link that will show the study
locations. At first, I didn't qualify for many studies, but that changed as
time passed.
My first study was "Citalopram to Enhance Cognition in HD (CIT-HD)," which took me to the University of Iowa. I called the phone number given on the website, hoping to be accepted in the study. When I enrolled, the study had been going on for a while. This particular study required frequent visits, for which I was paid transportation and food expenses, as well as putting us up in a hotel in town. At the beginning and end of the study, they required an MRI, (which gave me claustrophobia), took many vials of blood and a urine sample each time I came, always checked blood pressure and weight. Each visit, they had the same computer exercises to do, as well as going through mental and motor exercises. After the study ended, I learned that I had taken citalopram, not the placebo. I have continued to take it since the study, and I feel that it helps my thinking and mood. As that study ended, I was asked to join the PREDICT-HD study (also at University of Iowa, and many other locations), which had already been going on for a few years.
PREDICT-HD - For this study, only an annual visit is required. Each year, they take several vials of blood, a urine specimen, check my blood pressure and weight, and conduct oral and paper questionnaires. In addition, they check my walking and motor skills. For the past few years, they have done an MRI each time, but they always give me a great drug that makes it very enjoyable! They are also attempting to do a spinal tap, in order to start collecting spinal fluid from participants. They weren't able to do one for me this past visit, but they did a PET scan instead. The PET scan shows a lot about the brain, including sections that are dwindling.
Creatine Safety, Tolerability, & Efficacy in Huntington's Disease (CREST-E) - I'm excited to be starting the CREST-E study, which takes place in Chicago (and other locations), in December. I'll write more about my experiences there!
Enroll HD - One study that is recruiting right now, at lots of locations, is Enroll HD, which accepts everyone - whether they are HD positive or HD negative. If you are already participating in PREDICT-HD, as I am, your last visit to your study site should facilitate your "rolling into" Enroll HD.
