PROSPECT Registry for Individuals at Risk for Genetic Prion Disease
Purpose
PROSPECT is a prospective observational registry and longitudinal natural history study of adults at risk for genetic prion disease.
Condition
- Prion Diseases
Eligibility
- Eligible Ages
- Over 18 Years
- Eligible Sex
- All
- Accepts Healthy Volunteers
- Yes
Inclusion Criteria
- Age ≥18 years - At risk for genetic prion disease based on family history - Willing to comply with all study procedures including genetic testing and longitudinal follow-up - Resident in the United States - Sufficiently proficient in English to participate in all study procedures
Exclusion Criteria
- Lacking capacity to independently consent at time of initial enrollment - Symptomatic of prion disease at time of initial enrollment - Inability to provide a backup contact
Study Design
- Phase
- Study Type
- Observational [Patient Registry]
- Observational Model
- Cohort
- Time Perspective
- Prospective
Arm Groups
| Arm | Description | Assigned Intervention |
|---|---|---|
| Individuals at risk for Genetic Prion Disease | Adults age 18 years and older who are at risk for genetic prion disease based on family history and enrolled in the PROSPECT longitudinal natural history registry. |
Recruiting Locations
University Hospitals Cleveland Medical Center
Cleveland, Ohio 44106
Cleveland, Ohio 44106
More Details
- Status
- Recruiting
- Sponsor
- Brian Appleby
Detailed Description
The study collects genetic, cognitive, neuropsychiatric, symptom, and survival data to characterize disease onset and progression in individuals carrying or at risk for PRNP mutations. Information from this registry may support future biomarker development, prevention trials, and therapeutic studies in genetic prion disease