Teleneurology Assessment Program for Creutzfeldt-Jakob Disease

Overview

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, and evaluation of neuropsychiatric symptoms. Study partners also complete measures related to caregiver well-being and burden. Videoconference evaluations occur at baseline and at approximately 1, 2, 4, and 6 months, followed by evaluations every three months for the duration of the participant's survival. Assessments may be modified or omitted depending on the participant's clinical condition. Participation ends at death, if the clinical diagnosis changes and no longer includes prion disease, or if the participant or study partner chooses to discontinue participation. The study also examines the reliability and validity of standardized remote assessments, caregiver burden and well-being, and the potential benefits of caregiver support-group participation.

Conditions