Huntington's Disease Awareness

Erin Furr Stimming, MD

Furr Stimming reports financial relationships with Cure Huntington’s Disease Initiative, Cures Within Reach, Huntington’s Disease Society of America, Neurocrine Biosciences/Huntington Study Group, Prilenia, Roche/Genentech, Teva Pharmaceuticals, UniQure, PTC Therapeutics, NIH/University of Iowa.
September 25, 2023
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VIDEO: Patients may unintentionally misreport severity of Huntington's symptoms

Transcript

Editor’s note: This is an automatically generated transcript, which has been slightly edited for clarity. Please notify editor@healio.com if there are concerns regarding accuracy of the transcription.

Unfortunately, there are a number of unmet needs for those living with or at risk for HD. I’ll just briefly discuss, actually, a fairly surprising unmet need. We’ve demonstrated using the Enroll-HD dataset. So Enroll-HD is a worldwide observational study for those living with or at risk for HD, that individuals with HD-related chorea may actually be undertreated. And the reasons for that are unclear. It’s certainly reasonable to assume to some degree that the anosognosia that's very common in HD may be a contributing factor. So anosognosia is just a lack of awareness or lack of insight into the severity of symptoms. And so if an individual is being evaluated independently, he or she may not accurately, unintentionally, of course, report the severity of their symptoms. So I think it’s kind of a reminder to all of us. It's important to really ask pointed questions, specific questions in relation to ADLs and functional independence to determine whether or not the chorea is actually bothersome or troublesome and whether or not it’s negatively impacting quality of life and functional independence.