Teleneurology Assessment Program for Creutzfeldt-Jakob Disease

Conditions

• Creutzfeldt-Jakob Disease (CJD) | Prion Disease

Eligibility Criteria

Sex

ALL

Age

18 Years - N/A

Healthy Volunteers

Not accepted

Interventions

• Teleneurology Assessment — OTHER
  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.

Study Details

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.

Key Dates

First listed

Sep 25, 2026

Start date

Jan 25, 2022

Status verified

Sep 2026

Primary completion

Jan 31, 2032

Completion

Jan 25, 2032

Study Design

Enrollment

200 participants (estimated)

Arms

• Arm: Prion Disease
  Adults with definite or probable prion disease, or known PRNP mutation carriers with active disease, who participate in longitudinal videoconference assessments with a study partner.

Primary Outcome Measure

Number of Participants who complete a Teleneurology Assessment [ Time Frame: Baseline through end of participant follow-up, up to 10 years. ]

Central Contacts

• Brian S Appleby, MD
  216-368-0587
  [email protected]

Locations (1)

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