Teleneurology assessment for Creutzfeldt-Jakob disease

Is this trial a fit for you?

A plain-English reading of the study's rules. Only the study team can confirm whether you qualify.

What this trial studies

This is a longitudinal observational study using secure video visits to collect data on symptoms, neurological function, cognition, daily activities, and caregiver well-being in people with prion disease. Participants and a knowledgeable study partner complete clinical histories, cognitive tests, neurological exams, functional assessments, and neuropsychiatric evaluations at scheduled intervals. The study also examines the reliability of remote assessments and the impact on caregiver burden, with follow-up visits occurring over months and extending until death or withdrawal. Participation depends on having internet-enabled videoconference capability and a willing study partner who can attend assessments.

Why it matters

Who can join: the full rules

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.

Where it's running

• University Hospitals Cleveland Medical Center
  Cleveland, Ohio, United States Recruiting

Study contacts

• Study coordinator: Brian S Appleby, MD
• Email: cjdsurveillance@uhhospitals.org
• Phone: 216-368-0587

Similar studies

Other studies for the same condition or treatment. Recruiting studies are listed first.

• Observing the natural history of genetic Creutzfeldt-Jakob Disease

  This study is trying to learn more about genetic Creutzfeldt-Jakob Disease by looking at patients and their family members who carry a specific gene mutation to see how the disease develops and what might trigger symptoms.

  Recruiting Tel-Aviv Sourasky Medical Center · Tel Aviv · NCT05746715

• Identifying biomarkers in individuals at risk for prion disease

  This study is trying to find specific markers in people who might develop genetic prion diseases to see if they can help predict when the disease will start.

  Recruiting Massachusetts General Hospital · Charlestown, Massachusetts · NCT05124392

How to take part

1. Review the eligibility criteria above with your treating physician.
2. Check the official listing on ClinicalTrials.gov for the latest contact details and recruitment status.
3. Contact the study coordinator or principal investigator to ask for pre-screening. Pre-screening is free and never obligates you to enroll.