University Hospitals Cleveland Medical Center
This observational study uses secure videoconference visits to follow people with Creuztzfeldt-Jakob disease (CJD) over time. The study collects information about participants' symptoms, neurological function, thinking and memory, and ability to perform daily activities. It also collects information from study partners about the participant and about their own well-being and experiences as caregivers. The goal of the study is to better understand how CJD changes over time and to evaluate the use of remote assessments for CJD research and surveillance.
TAPCJD is a longitudinal observational study designed to collect standardized clinical information from individuals with Prion Disease using remote videoconference assessments. The study builds upon an earlier TAPCJD pilot study and is intended to improve understanding of the clinical course of Prion Disease and the use of remote assessments in prion disease research and surveillance. Participants take part in videoconference visits with a study partner who knows them well. Assessments include clinical history, cognitive assessment, modified neurological examination, functional assessment, an…
Inclusion Criteria: * Study Participant Inclusion Criteria: * Age greater than 18 years. * Participant must have a study partner who will be present with the participant for all videoconference evaluations (in the same physical location). * Participant meets criteria for definite or probable prion disease or is a known PRNP mutation carrier with active disease. * Participant and/or appropriate proxy consents to study participation. Study Partner Inclusion Criteria: * Age greater than 18 years. * Study partner must be present with the participant for all videoconference evaluations and must…
Participants undergo standardized videoconference-based assessments of clinical history, cognitive function, neurological function, functional status, and neuropsychiatric symptoms. Study partners provide information about the participant and complete caregiver well-being and burden assessments.
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