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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

Who can join

Ages 18 and older · All sexes · Healthy volunteers welcome

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

About the study

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

Sponsor: Brian Appleby · Participants: 2,000 · Started: Aug 25, 2026

Contact the study team

• Margaret Verba, MA · Phone: 216-368-2062
• Katie Glisic, MA · Phone: 216-368-0587

Official record on ClinicalTrials.gov — NCT07732608

Locations in the U.S.

From ClinicalTrials.gov, data retrieved Sep 30, 2026. Each study sets its own eligibility; the study team decides who can join.