After thoughtful deliberation by its Scientific Advisory Board, HDSA will award five the Huntington’s Disease Human Biology Project research grants to Joan O’Keefe, PhD, PT (Rush University Medical Center), Alby Richard, MD, PhD (University of Montreal), Charlene Smith-Geater, PhD (University of California, Irvine), Ana Gámez-Valero, PhD (Universidad de Barcelona), and Tamara Maiuri, PhD (McMaster University). The projects supported by the largest of its research initiatives represent HDSA’s patient-centric research focus which brings basic and clinical researchers together to facilitate HD science in the human condition – instead of in animal models – with the direct participation of people affected by HD. Click here for full story.
“HD Integrated Staging System (HD-ISS): A Novel Evidence-Based Classification System for Staging”
HD research in human participants is structured around expression of HD symptoms. A new framework for our understanding of HD that allows earlier markers of disease progression and clinical biomarkers to be taken into account would enable interventional studies to begin earlier in the course of disease. Leaders in the field recently formed the HD Regulatory Science Consortium (HD-RSC), a group of 37 members representing the biopharmaceutical industry, academia, and non-profit and community-advocacy organizations who have joined together to develop regulatory science strategies and new tools and methods to accelerate the approval of HD-therapeutics. HD-RSC created the Regulatory Science Forum (RSF) as a working group to develop strategies that will allow HD clinical trials to begin prior to onset of motor symptoms.
With extensive analysis of data from Enroll-HD, IMAGE-HD, PREDICT-HD and TRACK-HD, the RSF came up with the HD Integrated Staging System (HD-ISS), a novel, evidence-based classification system for stages of HD. HD-ISS encompasses the full course of HD from birth (Stage 0) to functional decline (Stage 3). This new staging scale for HD could help standardize clinical research and enable earlier interventional studies in HD. To read the full study, click here.
Online Survey: Calling all HD-Caregivers
Researchers at the Michigan School of Psychology are conducting a study on the emotional impact of caring for someone with HD in an effort to increase support resources for HD-caregivers. If you are 18 years or older, provide care for someone with HD, and speak or read English fluently, you may be eligible to participate in a one-time, online survey to share your experiences. To learn more, access the study flyer and survey link here.