NCT07732608 · Brian Appleby
PROSPECT Registry for Individuals at Risk for Genetic Prion Disease
(PROSPECT)
What this study is about
PROSPECT is a forward-looking observational registry and longitudinal natural history study of adults at risk for genetic prion disease.
View original scientific description
PROSPECT is a prospective observational registry and longitudinal natural history study of adults at risk for genetic prion disease.
Primary outcome measures
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.
Who can participate
This study lists these criteria on ClinicalTrials.gov. A study coordinator reviews eligibility during screening — this page does not determine whether you qualify.
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
Where
- Cleveland, Ohio
Collaborators
Case Western Reserve University, CJD Foundation, Prion Alliance
Related conditions & keywords
Frequently asked questions
What is a clinical trial?
A clinical trial is a research study that tests new medical treatments, drugs, devices, or procedures to determine their safety and effectiveness. Trials are carefully designed and monitored to protect participants while advancing medical knowledge.
Is it safe to participate?
Clinical trials follow strict safety guidelines and ethical standards. Trials must be reviewed and approved, and participants are closely monitored by medical professionals throughout the study. You can withdraw at any time if you choose.
Will I be compensated?
Many clinical trials offer compensation for your time, travel expenses, and inconvenience. The specific compensation varies by study and will be discussed during the screening process. All study-related medical care is typically provided at no cost to participants.
Will I receive a placebo instead of treatment?
When effective treatment exists, participants typically receive either the standard treatment plus the study intervention, or the standard treatment plus placebo. You would not be denied effective care. Placebos are primarily used when no proven treatment is available, or in addition to standard care. Your trial consent form will clearly explain what treatments you may receive.
Can I leave a trial if I change my mind?
Absolutely. Participation in clinical trials is completely voluntary. You have the right to withdraw from the study at any time, for any reason, without penalty or loss of benefits to which you are otherwise entitled.
How long does a clinical trial last?
Trial duration varies widely depending on the study design and purpose. Some trials last just a few weeks, while others may continue for months or years. The study coordinator will provide specific timeline information during your screening call.
Data: ClinicalTrials.gov · synced Sep 1, 2026 · Source of record for eligibility and locations