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Can a Long-Term watch program unlock the secrets of genetic prion disease?

NCT ID NCT07732608

Knowledge-focused Sponsor: Brian Appleby Source: ClinicalTrials.gov ↗

What the study statuses mean

This study's is highlighted.

Recruitment status, easiest to join first

Recruiting now This study
This trial is taking on new participants right now.
Not yet recruiting
Registered, but not yet taking participants.
By invitation only
Not open to general applications. Only people the study team invites can take part.
Paused
Paused for now. It may or may not start again.
Ongoing
Running, but no longer taking on new participants.
Completed
The trial has finished. Results may not be published yet.
Stopped early
Stopped early, before it reached the end. That can be for many reasons, including safety.
Cancelled
Cancelled before anyone took part.

Expanded access (not trials)

Expanded access
Not a trial. This treatment can be requested outside a study, case by case, for people who qualify.
Expanded access (paused)
Not a trial. The treatment can normally be requested outside a study, but is unavailable right now.
Expanded access (ended)
Not a trial. The treatment could once be requested outside a study, but no longer can.
Approved
The treatment has been approved, so it is available normally rather than through this programme.

When the status isn't known

Details not published
The full record has not been published yet, so there is little to show here.
Status unknown
This status has not been confirmed recently, so it may be out of date.

First seen Jul 29, 2026 · Last updated Sep 17, 2026 · Updated 6 times

Summary

This study follows adults with a family history of genetic prion disease to see how and when the condition first appears. Participants undergo regular check-ins and genetic testing over many years. The goal is to map the natural course of the disease and identify early markers that could one day guide prevention efforts.

What this could mean

Our plain-language read of the trial. This is informational only, not medical advice or a prediction.

What this could lead to
If successful, this study could help identify early signs of genetic prion disease and inform future prevention trials.
What could go wrong
This is an observational study, not a treatment trial. It will not test any therapy, and results may take many years to emerge.

This is an AI summary of the original study and may miss details. Read our disclaimer.

Study facts

What this study's own registry entry says, in plain language.

Participants

About 2,000 people

The number the study aims to enrol. It can still change while the study runs.

Started

Aug 2026

Expected to finish

Aug 2036

An estimate. End dates often move.

Lead sponsor

Other sponsor

The registry's catch-all category, for sponsors it does not file as a company, a government agency, or a research network.

Who can take part

This study's own entry requirements. Only the study team can say for certain whether you qualify.

Who is studied

Adults aged 18 years and older who are at risk for genetic prion disease based on family history. Participants must be willing to undergo genetic testing and longitudinal follow-up and must be asymptomatic at enrollment.

Ages

18 years and older

Sex

Anyone

Healthy volunteers

Accepted

You do not need to have the condition being studied to take part.

Show the full entry requirements

Copied word for word from the study's registry entry, so the wording is the study team's rather than ours.

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

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Conditions

The condition(s) this trial relates to.

prion disease human prion disease prevention target

As listed by the trial registrant

The condition terms exactly as the trial's registrant entered them.

Genetic prion disease Prion diseases

How to take part

Only the study team decides who joins. These are the ways to reach them.

  1. The places running it

    1 site. The list below names each one and where it is.

  2. The official record

    ClinicalTrials.gov lists the study team's own contact details, including names and phone numbers. We don't republish those.

    Open the record ↗

  3. A doctor treating you

    A doctor who knows your case can contact a study site on your behalf, and can tell you whether this study is worth pursuing at all.

Contacts and locations

Locations

  • University Hospitals Cleveland Medical Center

    RECRUITING

    Cleveland, Ohio, 44106, United States

More trials for these conditions

Other studies related to the condition(s) this trial covers.