Observational research studies in Huntington Disease (HD) are centrally important for the HD community. They help create a better understanding of the natural history of HD, clinically meaningful outcomes for clinical trials, and can provide a resource to enable respondents to participate in future research. Historically, observational studies have required in-person visits with a clinician at a clinical or research site. Our new online approach enables participation from the privacy and comfort of home.
The Huntington Study Group (HSG), which has been conducting clinical research in HD for over 25 years, has launched a new online research platform, myHDstory™. A pilot study, Making HD Voices Heard, is available on the myHDstory™ online platform. This pilot study will enable consenting adults to report what they feel, experience, and how they function. The purpose of this research study is to collect and analyze self-reported health information from between 200 and 600 adult patient volunteers who have been diagnosed with HD.
The Pilot Study will capture participant replies to questionnaires using their own compatible smartphones, laptops, desktops, or tablets. Devices outside of the home may be used, e.g. at a library or friend’s home, if internet connection is secure. This pilot study is being done to help improve understanding of HD; for example, how patients feel about and experience their symptoms and how the disease affects overall health and well-being.
If you would like more information about the Making HD Voices Heard Pilot Study, please visit the study website – https://huntingtonstudygroup.org/myhdstory/. You can also contact Lauren Falanga, the HSG Project Manager, at info@myHDstory.org or by phone at (800) 487-7671.