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NCT Number: NCT07732608

PROSPECT Registry for Individuals at Risk for Genetic Prion Disease

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

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Key information

Conditions

Prion Diseases Central Nervous System Diseases Central Nervous System Infections Infections Nervous System Diseases Neurodegenerative Diseases

Age range

18 year and older

Sex eligibility

All sexes

Study type

Observational

About this study

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

Who can participate

Healthy volunteers accepted: Yes

Only the study team can determine whether someone qualifies for participation.

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

Treatment and study plan

Primary outcomes

  1. Disease Onset or Death

    Time frame: 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.

Study contacts

Contact information is provided by the study sponsor or research team.

Katie Glisic, MA

CONTACT

[email protected]

216-368-0587

Margaret Verba, MA

CONTACT

[email protected]

216-368-2062

Sponsors and collaborators

Lead sponsor

University Hospitals Cleveland Medical Center

Other

Collaborators

  • CJD Foundation
  • Case Western Reserve University
  • Prion Alliance

Registry information

Official study title

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

Acronym: PROSPECT

Important dates

Study start
2026
Primary completion
2036
Study completion
2036
First posted
Jul 29, 2026
Registry last updated
Jul 30, 2026

OpenTrials presents study information sourced from ClinicalTrials.gov. The official registry record should be consulted for the latest information.

View the official ClinicalTrials.gov record (opens in a new tab)

This listing is for discovery and informational purposes only. It is not medical advice, does not guarantee that a study is recruiting, and does not determine eligibility. Contact the study team and a qualified healthcare professional when considering participation.

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