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2019 Global Brain Health Leaders (GBHI)

Building evidence for palliative care for people with prion disease

Krista Harrison, PhD
Global Brain Health Institute and UCSF
San Francisco, CA - United States



Prion diseases occur when the prion protein (found throughout the body) begins to fold into an abnormal three-dimensional shape. Sporadic Creutzfeldt-Jakob disease (sCJD) is a rare prion disease that usually progresses rapidly. Dr. Harrison proposes to characterize palliative care needs and experiences through interviews with ten caregivers of people who died from sCJD after enrolling in one of the studies at the University of California, San Francisco’s Memory and Aging Center. Furthermore, the researchers will develop a palliative care tool kit based on interviews with interdisciplinary clinicians who are experienced in prion disease treatment and a focus group with the Memory Aging Center. If successful, the study results could develop guidance for palliative care for individuals with prion disease and possibly other dementias, worldwide.
 

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