An observational study in Creutzfeldt-Jakob Disease (CJD) | Prion Disease, sponsored by University Hospitals Cleveland Medical Center. Recruiting at 1 site in United States. Open to participants aged 18 Years and older. Per ClinicalTrials.gov, last updated 2026-09-25.
Sponsored by University Hospitals Cleveland Medical Center · Observational
Among 227 studies in Caregiver Burden with a site in United States — 59 open to participants now, 72 under way, 1 of them phase 3. Caregiver Burden · United States.
Among the 227 studies in Caregiver Burden with a site in United States, this one is the 6th largest by planned enrollment of the 19 observational ones that give a count, is one of 27 that started in 2022, is one of 19 observational ones, reaches primary completion later than 71 of the 71 other live ones, and was the 222nd registered.
500 studies on the registry are indexed under Caregiver Burden; 164 are open to participants now.
Browse Caregiver Burden studies →59 of the 227 studies in Caregiver Burden with a site in United States are open now. Recruiting first, the newest first:
University of Washington · Sites in United States
Massachusetts General Hospital · Sites in United States
University of Chicago · Sites in United States
The University of Texas Medical Branch, Galveston · Sites in United States
Icahn School of Medicine at Mount Sinai · Sites in United States
A study can be open while its sites in United States have not opened yet or have stopped. Only those recruiting at a site in United States →
Of the 88 Caregiver Burden studies recruiting now, 67 (76%) set no upper age limit and 7 (8%) stop at 75 or younger; 8 take children under 18; 38 take healthy volunteers.
This study: 18 Years and older · all sexes · no healthy volunteers.
The full table on the hub →This tab as a report to print or save as PDF → With an account.
227 studies; the count open now beside each. This study's row is marked.
A study in two phases is counted once above. Listed by phase, each with its combined phases: Phase 1 5 · Phase 2 9 · Phase 3 4 · Phase 4 2
First in 2000; this study’s year is marked. 27 started in 2022.
This study's planned enrollment of 200 is above the median of 100 across 80 observational studies indexed under Caregiver Burden.
Median enrollment 60 across the 207 interventional studies, 47 across the 19 observational. Of the 139 that completed or were terminated, 54 (39%) have results posted.
This tab as a report to print or save as PDF → With an account.
14 of 227 have an industry lead sponsor. The 10 most frequent:
University Hospitals Cleveland Medical Center is the lead sponsor of 295 studies on the registry; 45 are open to participants now.
Of its 36 completed or terminated interventional studies of FDA-regulated products, 30 (83%) have results posted.
University Hospitals Cleveland Medical Center has 2 studies filed under Caregiver Burden — fewer than ten, so there is no comparison to draw.
29 of the studies in Caregiver Burden with a site in United States that are under way reach primary completion within a year, 1 of them phase 3. Phase 3 first, then by date:
| Study | Primary completion |
|---|---|
| NCT06167746Phase 3University of PennsylvaniaiCare4Me Transitions | 2027-09-30 |
| NCT05543681IGC Pharma, LLCClinical Trial on Agitation in Alzheimer's Dementia | 2026-11 |
| NCT06099197Indiana UniversityI-CARE 2: Mobile Telehealth to Reduce Alzheimer'S-related Symptoms in Hispanic Individuals | 2026-11 |
| NCT06283953Massachusetts General HospitalBoosting Resources for Tracheostomy Care at Home | 2026-12-01 |
| NCT07594730New York State Psychiatric InstituteBrief Intervention Addressing Stigma Among Parents of Children With Mental Health Problems | 2026-12-01 |
Among the 227 studies in Caregiver Burden with a site in United States, from their registry updates:
This tab as a report to print or save as PDF → With an account.
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.
Adults with definite or probable prion disease, or known PRNP mutation carriers with active disease, who are referred to TAPCJD and meet study eligibility criteria. Each participant must have an adult study partner who knows the participant well, has regular contact with them, and is present for the videoconference assessments.
Go through the criteria one by one — yes, no or not sure — and take the list to your doctor or the study team. Kept in this browser only.
Study Partner Inclusion Criteria:
Exclusion Criteria:
Study Participant Exclusion Criteria:
Study Partner Exclusion Criteria:
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.
Other: Teleneurology Assessment
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.
Number of Participants who complete a Teleneurology Assessment
The number of participants who complete at least on standardized teleneurology assessment by videoconference will be recorded
Time frame: Baseline through end of participant follow-up, up to 10 years.
Plan to share: Yes — Deidentified participant data may be shared.
Started Jan 2022 (actual). Primary completion is estimated for Jan 2032, 120 months after the start.
Of 33 non-industry observational studies under Caregiver Burden, half reached primary completion within 30 months of starting (the median), counting those still running; a quarter within 7 and three quarters within 49. This study's planned 120 months is above that.
Counting every sponsor, half of 35 studies reached it within 30 months; a quarter within 7 and three quarters within 59.
How these figures are worked out, and which studies are left out of them.
From the registry record's own update history. This site started tracking changes on Sep 25, 2026; for anything earlier, see the record history on ClinicalTrials.gov ↗
Eligibility is decided by the study team. Share this record with your doctor or contact the team directly.
Contact study teamGet an email when the registry record changes — status, dates, results — or when someone posts here.
Sign in to followQuestions and observations about this study, from anyone following it. Not medical advice, and not a channel to the study team — their contact details are on the registry record.
Sign in to join the discussion. Reading takes no account; posting does. You choose a display name, and a pseudonym is the default.
Nothing here yet. If you are running this trial, taking part in it, or weighing whether to, this is the place to say so.
University Hospitals Cleveland Medical Center →