PROSPECT Registry for Individuals at Risk for Genetic Prion Disease

PROSPECT: A Registry and Longitudinal Natural History Study of Individuals at Risk for Genetic Prion Disease

Status

Recruiting

Phases

Unknown

Study type

Observational

Source

ClinicalTrials.gov

Registry ID

NCT07732608

Acronym

PROSPECT

Enrollment

2000

Registered

2026-07-29

Start date

2026-08-25

Completion date

2036-08-01

Last updated

2026-09-16

For informational purposes only — not medical advice. Sourced from public registries and may not reflect the latest updates. Terms

Conditions

Prion Diseases

Keywords

PRNP mutation, Natural history, Genetic testing

Brief 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

Interventions

None listed

Study design

Observational model

COHORT

Time perspective

PROSPECTIVE

Eligibility

Sex/Gender

ALL

Age

18 Years to No maximum

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

Design outcomes

Primary

Measure	Time frame	Description
Disease Onset or Death	Baseline and annual follow-up assessments for up to 10 years after enrollment.	To determine the occurrence of disease onset or death among individuals at risk for genetic prion disease according to PRNP genotype.

Countries

United States

Contacts

CONTACTMargaret Verba, MA

margaret.verba@uhhospitals.org216-368-2062

CONTACTKatie Glisic, MA

kae13@case.edu216-368-0587

PRINCIPAL_INVESTIGATORBrian S Appleby, M.D.

Case Western Reserve University/University Hospital's Cleveland Medical Center

Outcome results