Scientists hunt for clues to predict rare brain disease before symptoms strike

NCT ID NCT05124392

First seen Jun 24, 2026 · Last updated Jun 27, 2026 · Updated 1 time

Summary

This study aims to find biological markers in spinal fluid and blood that could signal the start of prion disease before symptoms appear. Researchers will follow 150 people who carry a genetic mutation for prion disease, along with family members and healthy volunteers. Participants will undergo cognitive tests, blood draws, and lumbar punctures over time. The goal is to better predict when the disease will begin and help design future treatment trials.

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 could help predict when prion disease will start in people who carry the genetic mutation, enabling earlier treatment in future trials.

What could go wrong

This is an observational study, not a treatment trial. It may not find reliable biomarkers, and results may not apply to all forms of prion disease.

Disclaimer Read more

This is a summary of the original study . Summaries may miss details or leave out important information. Before applying or accepting participation, make sure you have read and understood the full study. Curemydisease.com takes no responsibility whatsoever for anything missed, misunderstood, or acted upon as a result of our summary — we know it does not capture everything.

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Conditions

The condition(s) this trial relates to.

fatal familial insomnia Gerstmann-Straussler-Scheinker syndrome inherited Creutzfeldt-Jakob disease prion disease

As listed by the trial registrant

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

Contacts and locations

Study contacts

  • Contact

    Email: •••••@•••••

  • Contact

    Phone: •••-•••-•••• Email: •••••@•••••

Locations

  • Alzheimer's Clinical and Translational Research Unit

    RECRUITING

    Charlestown, Massachusetts, 02129, United States

    Contact Phone: •••-•••-•••• Email: •••••@•••••

    Contact Phone: •••-•••-•••• Email: •••••@•••••

    Contact