[{"data":1,"prerenderedAt":-1},["ShallowReactive",2],{"health-study-detail:100657566":3},{"organization":4,"outcomesModule":7,"designInfo":14,"detailedDescription":17,"studyPopulation":18,"armGroups":19,"interventions":25,"overallOfficials":13,"centralContacts":30,"locations":36,"responsibleParty":57,"collaborators":60,"id":66,"slug":67,"hasResults":68,"nctId":69,"briefTitle":70,"officialTitle":71,"acronym":72,"eligibilityCriteria":73,"healthyVolunteers":68,"sex":74,"minAge":75,"maxAge":13,"enrollmentInfo":76,"targetDuration":13,"studyType":79,"phases":13,"briefSummary":80,"conditions":81,"keywords":83,"overallStatus":38,"whyStopped":13,"lastUpdateSubmitDate":91,"lastUpdatePostDateStruct":92,"startDateStruct":95,"completionDateStruct":97,"leadSponsor":99,"locationsCount":100},{"fullName":5,"class":6},"University Hospitals Cleveland Medical Center","OTHER",{"primaryOutcomes":8,"secondaryOutcomes":13,"otherOutcomes":13},[9],{"measure":10,"description":11,"timeFrame":12},"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","Baseline through end of participant follow-up, up to 10 years.",null,{"allocation":13,"interventionModel":13,"interventionModelDescription":13,"primaryPurpose":13,"observationalModel":15,"timePerspective":16,"maskingInfo":13},"COHORT","PROSPECTIVE","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.\n\nParticipants 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.\n\nVideoconference 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.\n\nThe 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.",[20],{"label":21,"type":13,"description":22,"interventionNames":23},"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.",[24],"Other: Teleneurology Assessment",[26],{"type":6,"name":27,"description":28,"armGroupLabels":29,"otherNames":13},"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.",[21],[31],{"name":32,"role":33,"phone":34,"phoneExt":13,"email":35},"Brian S Appleby, MD","CONTACT","216-368-0587","cjdsurveillance@uhhospitals.org",[37],{"facility":5,"status":38,"city":39,"state":40,"zip":41,"country":42,"countryCode":43,"cosmosGeoPoint":44,"geoPoint":49,"contacts":50},"RECRUITING","Cleveland","Ohio","44106","United States","US",{"type":45,"coordinates":46},"Point",[47,48],-81.69541,41.4995,{"lat":48,"lon":47},[51,52,54],{"name":32,"role":33,"phone":34,"phoneExt":13,"email":35},{"name":53,"role":33,"phone":34,"phoneExt":13,"email":13},"Katie Glisic",{"name":55,"role":56,"phone":13,"phoneExt":13,"email":13},"Brian S Appleby, M.D.","PRINCIPAL_INVESTIGATOR",{"type":56,"investigatorFullName":58,"investigatorTitle":59,"investigatorAffiliation":5,"oldNameTitle":13,"oldOrganization":13},"Brian Appleby","Physician",[61,63],{"name":62,"class":6},"Case Western Reserve University",{"name":64,"class":65},"CJD Foundation","UNKNOWN","100657566","teleneurology-assessment-program-for-creutzfeldt-jakob-disease-100657566",false,"NCT07840547","Teleneurology Assessment Program for Creutzfeldt-Jakob Disease","Expanded Protocol for Teleneurology Assessment Program for Creutzfeldt-Jakob Disease (TAPCJD)","TAPCJD","Inclusion Criteria:\n\n* Study Participant Inclusion Criteria:\n* Age greater than 18 years.\n* Participant must have a study partner who will be present with the participant for all videoconference evaluations (in the same physical location).\n* Participant meets criteria for definite or probable prion disease or is a known PRNP mutation carrier with active disease.\n* Participant and\u002For appropriate proxy consents to study participation.\n\nStudy Partner Inclusion Criteria:\n\n* Age greater than 18 years.\n* 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.\n* Study partner must have internet access and a computer, smartphone, or tablet with videoconference capabilities.\n* Study partner consents to study participation.\n\nExclusion Criteria:\n\nStudy Participant Exclusion Criteria:\n\n* Participant's diagnosis is most likely not prion disease.\n* Participant or study partner is less than 18 years of age.\n* Participant or study partner does not have internet access or a computer, smartphone, or tablet with videoconference capabilities.\n* Participant does not have a study partner.\n\nStudy Partner Exclusion Criteria:\n\n* Study partner is less than 18 years of age.\n* 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.\n* Study partner does not have internet access or a computer, smartphone, or tablet with videoconference capabilities.\n* Study partner does not consent to study participation.","ALL","18 Years",{"count":77,"type":78},200,"ESTIMATED","OBSERVATIONAL","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.",[82],"Creutzfeldt-Jakob Disease (CJD) | Prion Disease",[84,85,21,86,87,88,89,90],"CJD","Creutzfeldt-Jakob Disease","Teleneurology","Telemedicine","Natural History","Caregiver Burden","CJD Surveillance","2026-09-21",{"date":93,"type":94},"2026-09-25","ACTUAL",{"date":96,"type":94},"2022-01-25",{"date":98,"type":78},"2032-01-25",{"name":5,"class":6},1]