PROSPECT Registry for Individuals at Risk for Genetic Prion Disease

Brian Appleby2,000 enrolled

Overview

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

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

Study Type

OBSERVATIONAL

Enrollment

2,000

Conditions

Prion Diseases

Eligibility

Sex: ALLMin age: 18 YearsHealthy volunteers:

Medical Language ↔ Plain English

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

Locations (1)

University Hospitals Cleveland Medical Center

Cleveland, Ohio, United States

RECRUITING

Outcomes

Primary Outcomes

Disease Onset or Death

To determine the occurrence of disease onset or death among individuals at risk for genetic prion disease according to PRNP genotype.

Time frame: Baseline and annual follow-up assessments for up to 10 years after enrollment.

Central Contacts

Margaret Verba, MA

CONTACT

216-368-2062 margaret.verba@uhhospitals.org

Katie Glisic, MA

CONTACT

216-368-0587 kae13@case.edu

Data from ClinicalTrials.gov

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