Alport patients needed: join a registry to speed up research
NCT ID NCT06526741
First seen Jun 27, 2026 · Last updated Jun 27, 2026
Summary
This registry is for people in the US with Alport syndrome. It collects health information over time through a secure online portal. The goal is to gather real-world data to help researchers understand the disease better and design future clinical trials. No treatments or medications are given—it's purely about sharing your health history to advance science.
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 help researchers better understand Alport syndrome and speed up the development of new treatments or a cure.
What could go wrong
This is an observational registry, not a treatment trial. It collects data only, so it won't directly improve health. Participation relies on self-reporting, which may have inaccuracies.
Disclaimer
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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.
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: •••••@•••••
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Contact
Phone: •••-•••-•••• Email: •••••@•••••
Locations
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On-line only: https://asfalportpatientregistry.healthie.net
RECRUITINGScottsdale, Arizona, 85261, United States
Contact
Contact Phone: •••-•••-•••• Email: •••••@•••••
Contact Phone: •••-•••-•••• Email: •••••@•••••
Contact