NCT07732608RecruitingAccepts Healthy Volunteers

PROSPECT Registry for Individuals at Risk for Genetic Prion Disease

Brian Appleby

Start Date

8/25/2026

Completion Date

8/1/2036

Summary

PROSPECT is a prospective observational registry and longitudinal natural history study of adults at risk for genetic prion disease.

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

Eligibility Criteria

Age Range: 18 years to No maximum

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

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Conditions

Prion Diseases

Locations

University Hospitals Cleveland Medical Center

Cleveland, Ohio 44106

United States