Rare nerve disease study seeks volunteers to track symptoms for 6 years

NCT ID NCT05600764

First seen Jun 27, 2026 · Last updated Jun 27, 2026

Summary

This study aims to document how TRPV4 neuropathy changes over 6 years in people with a confirmed TRPV4 gene mutation. Researchers will track symptoms, nerve function, and disability through annual visits at Johns Hopkins. The study does not test any treatment but will help understand the disease's natural course. Eligible participants include patients aged 3-80 with a TRPV4 mutation or their first-degree relatives.

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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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As listed by the trial registrant

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

Contacts and locations

Study contacts

  • Contact

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

  • Contact

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

Locations

  • Johns Hopkins

    RECRUITING

    Baltimore, Maryland, 21287, United States

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