Clinical trials involve volunteers participating in medical research to help understand if a new form of treatment will be safe and effective. Scientists around the world are currently conducting research to find ways to prevent the symptoms of HD from occurring and to find better treatments for the symptoms. Much of the research is done in the lab without human participants, but sometimes healthy and symptomatic people can volunteer to help test the scientists’ theories.
Some clinical trials involve treatments and some only involve observations. In a treatment trial a patient with HD receives medication or a placebo (which resembles the medication, but has no medicine). At the end of a specific period of time, researchers compare how well the group receiving the medicine is doing to the group receiving the placebo. If the group receiving the medication is doing better, the treatment is effective. All along, the doctors will also be checking on the health of the participants in the trial to make sure the treatment is safe or only causes minor side-effects.
In observational studies researchers are trying to observe how HD is progressing and what changes are occurring. These studies are important for helping scientists figure out when the best time is for trying new treatments.
Before a clinical trial begins the researchers are required to discuss what the possible risks and benefits of participating are. They will also let you know what is expected of you to let you decide if you can fully commit to participating.
Thinking about participating in an HD Clinical Trial? Check out these links:
A database of privately and publicly funded clinical studies conducted around the world.
Funding biomedical research with the goal of developing drugs to slow the progression of HD.
Information for scientists, clinicians, patients, relatives and caregivers.
Organizes clinical research trials for HD.