Recruiting

Observational Study

Sponsor:

Brian Appleby

Code:

NCT07732608

Conditions

Prion Diseases

Eligibility Criteria

Sex: All

Age: 18+

Healthy Volunteers: Accepted

Study Details

Brief summary:

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

Conditions

Prion Diseases

Study ID

NCT07732608

Start date

Aug 25, 2026

Status verified date

Aug, 2026

Completion date

Aug, 2036

Anticipated

Primary completion date

Aug, 2036

Anticipated

Eligibility Criteria

Eligibility Criteria

Sex: All

Age: 18+

Healthy Volunteers: Accepted

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

Enrollment

2000 participants

Anticipated

Interventions and Outcome Measures

Arms

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.

Primary outcome measure

  • Disease Onset or Death [ Time Frame: Baseline and annual follow-up assessments for up to 10 years after enrollment. ]

Central Contacts and Locations

Central contacts

Margaret Verba, MA

216-368-2062mmv57@case.edu

Katie Glisic, MA

216-368-0587kae13@case.edu

Locations

University Hospitals Cleveland Medical Center

Recruiting

Cleveland, Ohio, United States, 44106

Contacts

Margaret Verba, MA

216-368-2062mmv57@case.edu

More Information

Sponsor

Brian Appleby

Last update posted

Sep 1, 2026

Last verified

Aug, 2026

Keywords

  • PRNP mutation
  • Natural history
  • Genetic testing

Trial information was received from ClinicalTrials.gov and was last updated on 2026-09-10. This information was provided to ClinicalTrials.gov by Brian Appleby on 2026-09-01.