New global registry aims to unlock secrets of rare brain disease DRPLA

NCT ID NCT05489393

First seen Apr 05, 2026 · Last updated May 03, 2026 · Updated 4 times

Summary

This study is building a worldwide database of information from people with DRPLA, a rare genetic brain disorder. Researchers will collect details about symptoms, daily life, and disease impact through questionnaires filled out by patients or their caregivers. The goal is to better understand the disease and help connect patients with future research opportunities.

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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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Contacts and locations

Locations

  • CureDRPLA

    RECRUITING

    New York, New York, 11231, United States

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

    Contact

Conditions

Explore the condition pages connected to this study.