NCT07840547 · RECRUITING
Teleneurology Assessment Program for Creutzfeldt-Jakob Disease
This observational study follows people who already have Creutzfeldt-Jakob disease, a rare prion disease, through secure video visits. Researchers track symptoms, thinking, memory, and daily abilities over time, and also ask study partners about their caregiving experience. No drug is being tested. No phase applies because nothing is being given.
Eligibility criteria
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 have knowledge of the participant's abilities before the onset of illness. The study partner should be with the participant at least three times per week or for a total of five hours per week as the illness progresses. * Study partner must have internet access and a computer, smartphone, or tablet with videoconference capabilities. * Study partner consents to study participation. Exclusion Criteria: Study Participant Exclusion Criteria: * Participant's diagnosis is most likely not prion disease. * Participant or study partner is less than 18 years of age. * Participant or study partner does not have internet access or a computer, smartphone, or tablet with videoconference capabilities. * Participant does not have a study partner. Study Partner Exclusion Criteria: * Study partner is less than 18 years of age. * Study partner does not have sufficient knowledge of the participant's abilities prior to the onset of illness or does not have sufficient ongoing contact with the participant. * Study partner does not have internet access or a computer, smartphone, or tablet with videoconference capabilities. * Study partner does not consent to study participation.
The sponsor's own eligibility wording, lightly reformatted. The study team makes the final eligibility decision — worth discussing with your doctor.
Eligibility criteria as of 2026-09-25