According to a story from EurekAlert! a recent study that was published in the Journal of Huntington’s Disease has concluded that while this rare disease community is excited about what the latest clinical trials have to offer, there is also some risk that patients may not actually fully understand what they should expect from them. This means that doctors need to do a better job of discussing clinical trials in detail with their patients so that they can make a well-informed decision.
About Huntington’s Disease
Huntington’s disease is a heritable disorder that causes brain cells to die. This is a long term, progressive, and ultimately lethal disease that causes severe debilitation over time. The disease is caused by a genetic mutation that affects the HTT gene. It normally appears between 30 and 50 years, but in rare cases it can occur before age 20. Symptoms of Huntington’s may first appear as subtle mood and behavioral changes and loss of coordination. Other symptoms include random movements called chorea, abnormal posture, sleep issues, trouble chewing, swallowing, and speaking, dementia, anxiety, depression, and impulsivity. Nine percent of deaths are the result of suicide. Treatment for Huntington’s disease is symptomatic, with no cure or disease altering therapies available. Most patients die around 15 to 20 years after their diagnosis. To learn more about Huntington’s disease, click here.
The Risks of Clinical Trials
As there are several potential treatments undergoing experimental trials for Huntington’s disease, it is definitely a very exciting time for the community, and disease-modifying treatment that can slow disease progression could be a reality in the not-so-distant future. It is no surprise that these patients are eager to get involved in the trials, but patients should have a proper understanding of the risks involved before trying to get into a trial. At the end of the day these medications are investigational and experimental in nature and there is a real possibility of adverse effects or safety risks; not to mention all participants may not receive the real drug for purposes of placebo.
Getting Informed About Trials
A survey of 73 patients showed that most of them had a positive view of trials and thought they were safe overall. Patients with prior experience in research participation held a more favorable opinion of them. The results showed that patients also desired as much info as possible before starting a trial. Patients were more likely to get involved if the method of administration was less invasive. Respondents also appeared to hold some misconceptions however, believing that a clinical trial would be comparable to care received in a specialty clinic and that research was primarily for their own individual benefit. The authors suggested that some of these responses may be the result of cognitive declines experienced by patients.
Check out the original study here.