New registry aims to unlock secrets of rare bleeding disorder

NCT ID NCT05437536

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

Summary

This study creates a web-based registry for people with severe von Willebrand disease (sVWD), a rare bleeding disorder. Researchers will collect information from up to 400 participants about their medical history, symptoms, and lab results. The goal is to build a detailed database to support future research and better understand the disease.

What this could mean

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

What this could lead to
If successful, this registry could provide valuable insights into severe VWD, helping researchers design better treatments and improve patient care.
What could go wrong
This is an observational registry, not a treatment trial. It relies on self-reported data, which may be incomplete or biased, and results may take years to impact patient care.

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

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Conditions

The condition(s) this trial relates to.

As listed by the trial registrant

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

Contacts and locations

Locations

  • VWD Connect Foundation

    RECRUITING

    Wellington, Florida, 33414, United States

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