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Autor:
Mônica Santoro Haddad, Martha Nance, Jan C. Frich, J Giuliano, Erika Bjorklund Pope, Mary Edmondson, LaVonne Goodman, Richard Roxburgh, Mark Guttman, Zofia H. Miedzybrodzka, Eugene C. Nelson, Daniela Rae
Publikováno v:
Journal of Huntington's Disease
Background: Little is known about the organization of clinical services for Huntington’s disease (HD). Objective: To describe how health care services are organized and delivered in HD-clinics taking part in or eligible for the Enroll-HD study. Met
Publikováno v:
Journal of Huntington's Disease. 4:261-270
BACKGROUND: The complex effects of Huntington’s disease (HD) negatively impact on every area of independent living. The perspectives of people impacted by HD on how to best manage the disease are not clearly understood. OBJECTIVE: To identify what
Autor:
Peter Hagell, Stephen Smith
Publikováno v:
Journal of Huntington's Disease. 2:315-322
Background: The carer impact of neurodegenerative disorders such as Huntington's disease (HD) is vast. Attempts to measure carer QoL in neurodegenerative disorders include the three-dimensional (Practical aspects of Caregiving, PC; Satisfaction with