Researchers in Spain are studying whether a combination of vitamins approved to treat a different brain disorder, biotin-thiamine responsive basal ganglia disease (BTBGD), can be used to treat movement symptoms in HD. BTBGD causes changes to a person’s movement, mood, and thinking abilities due to an alteration in the body’s ability to use thiamine (vitamin B1). Scientists observed that, in HD, changes in certain protein levels are similar to the changes seen in BTBGD. Daily, long-term supplementation with biotin and thiamine is an approved treatment to minimize the symptoms of BTBGD. Researchers are now looking to see whether this combined vitamin regimen can be used to treat HD. For the full scoop from HDBuzz, click here.
Happy International Clinical Trials Day: Thank you Researchers & Participants
May 20th is recognized as Clinical Trials Day to commemorate what is regarded as the first randomized clinical trial initiated by James Lind on May 20, 1747. In this momentous study, Lind analyzed possible treatments of scurvy in shipmates aboard the HMS Salisbury of the British Royal Navy.
As we commemorate 247 years of clinical trials and the vast advances in medical treatment and science that have been brought about from them, HDSA extends its gratitude to clinical researchers, healthy volunteers, and trial participants who allow us to press on in the search for novel therapies and cures for Huntington’s Disease.
Participate in HD Research from home: Online surveys and myHDstory
Are you interested in participating in HD research, but uncertain where to start? How about at home! Scientists around the world are seeking your input for online surveys that can be completed from the comfort of your own home to study the impacts of HD on the lives of the people it effects—including caregivers, family members, and partners of people with HD in addition to individuals with the disease. To learn more, click here.
To learn more about one such study, check out Help4HD’s podcast. Expert HD clinician Dr. Karen Anderson, and HD study startup guru, Jody Goldstein, recently joined Lauren Holder for an episode on HSG’s new online research project, myHDstory. This online research platform was developed with the goal of better understanding the experiences of people living with HD, determining clinical outcomes important to people affected by the disease, and gathering de-identified data related to their experiences. The best part is that participants can complete this study on their own time, whenever and wherever they want to. HSG is now recruiting participants for a pilot study that will ask people 18 years and older with a diagnosis of HD to report on their day-to-day experiences with the disease. To learn more and see if you may be eligible to participate, visit the HSG website, or email info@myhdstory.org. To listen to the full podcast episode, click here.
