New registry aims to unlock secrets of rare bleeding disorder
NCT ID NCT05437536
First seen Jun 27, 2026 · 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 — 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.
Disclaimer
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This is a summary of
the original study
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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.
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.
As listed by the trial registrant
The condition terms exactly as the trial's registrant entered them.
Contacts and locations
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Study contacts
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Contact
Phone: •••-•••-•••• Email: •••••@•••••
Locations
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VWD Connect Foundation
RECRUITINGWellington, Florida, 33414, United States
Contact Phone: •••-•••-•••• Email: •••••@•••••