Description: In this episode, we highlight the winners of our platform award at CSM 2022. Lori Quinn talks to Chris Burke about her team’s research on long-term PT follow up to promote exercise in people with HD. They discuss findings related to feasibility, participant engagement, and outcomes related to function, disease progress and physical activity during the year-long study. They also discuss innovative models to provide care for and do research with people with HD, and unique challenges in the HD population. Whether you missed it at CSM or are looking for bonus clinical insights beyond the platform, this is definitely worth a listen!
The Degenerative Disease Special Interest Group is part of the Academy of Neurologic Physical Therapy – www.neuropt.org
Guest Information:
Lori Quinn, PT, EdD
Associate Professor of Movement Science & Kinesiology
Teachers College, Columbia University
Related Information/Links
Huntington’s Disease Society of America (HDSA): https://hdsa.org/
European HD Network: http://www.ehdn.org/
ENGAGE-HD workbook: http://www.ehdn.org/wp-content/uploads/2020/07/ENGAGE-HD-Physical-Activity-Workbook-v2-UK.pdf
PT/Exercise Resources: http://www.ehdn.org/physiotherapy-wg/#physioresources
Enroll-HD: https://www.enroll-hd.org/
HD PRO-TRIAD: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3990832/ (Carlozzi NE, Victorson D, Sung V, et al. HD-PRO-TRIAD™ Validation: A Patient-reported Instrument for the Symptom Triad of Huntington’s Disease. Tremor Other Hyperkinet Mov (N Y). 2014;4:223. Published 2014 Apr 14. doi:10.7916/D8PN93NZ)
Unified Huntington’s Disease Rating Scale (UHDRS) https://www.sralab.org/rehabilitation-measures/unified-huntingtons-disease-rating-scale-uhdrs-tm
Podcast: Play in new window | Download (Duration: 38:13 — 30.6MB)
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