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Alport patients needed: join a registry to speed up research

NCT ID NCT06526741

Knowledge-focused Sponsor: Alport Syndrome Foundation Source: ClinicalTrials.gov ↗

What the study statuses mean

This study's is highlighted.

Recruitment status, easiest to join first

Recruiting now This study
This trial is taking on new participants right now.
Not yet recruiting
Registered, but not yet taking participants.
By invitation only
Not open to general applications. Only people the study team invites can take part.
Paused
Paused for now. It may or may not start again.
Ongoing
Running, but no longer taking on new participants.
Completed
The trial has finished. Results may not be published yet.
Stopped early
Stopped early, before it reached the end. That can be for many reasons, including safety.
Cancelled
Cancelled before anyone took part.

Expanded access (not trials)

Expanded access
Not a trial. This treatment can be requested outside a study, case by case, for people who qualify.
Expanded access (paused)
Not a trial. The treatment can normally be requested outside a study, but is unavailable right now.
Expanded access (ended)
Not a trial. The treatment could once be requested outside a study, but no longer can.
Approved
The treatment has been approved, so it is available normally rather than through this programme.

When the status isn't known

Details not published
The full record has not been published yet, so there is little to show here.
Status unknown
This status has not been confirmed recently, so it may be out of date.

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.

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

Study facts

What this study's own registry entry says, in plain language.

Participants

About 2,500 people

The number the study aims to enrol. It can still change while the study runs.

Started

Aug 2023

Expected to finish

Aug 2048

An estimate. End dates often move.

Lead sponsor

Other sponsor

The registry's catch-all category, for sponsors it does not file as a company, a government agency, or a research network.

Who can take part

This study's own entry requirements. Only the study team can say for certain whether you qualify.

Who is studied

Alport syndrome patients

Ages

0 years and older

Sex

Anyone

Healthy volunteers

Not accepted

This study is not open to healthy volunteers. The entry requirements below say who it is open to.

Show the full entry requirements

Copied word for word from the study's registry entry, so the wording is the study team's rather than ours.

Inclusion Criteria: 1. Confirmed diagnosis of Alport syndrome by a certified genetic counselor, treating physician or nephrologist. 2. Signed informed consent/assent must be provided by the subject and/or caregiver (parent/legal guardian) including compliance with the restrictions listed in the informed consent/assent form and in the study protocol. (Separate age-appropriate assent forms are provided for ages 7-12 years and ages 13-17 years.) 3. Must reside in the USA or US territories and outlying islands. (This criterium may change at an as-yet undetermined future date.) Exclusion Criteria: \[none\]

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Conditions

The condition(s) this trial relates to.

Alport syndrome hematuria, benign familial hematuria, benign familial, 1 hereditary nephritis

As listed by the trial registrant

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

Alport syndrome Hereditary nephritis Thin basement membrane disease

How to take part

Only the study team decides who joins. These are the ways to reach them.

  1. The places running it

    1 site. The list below names each one and where it is.

  2. The official record

    ClinicalTrials.gov lists the study team's own contact details, including names and phone numbers. We don't republish those.

    Open the record ↗

  3. A doctor treating you

    A doctor who knows your case can contact a study site on your behalf, and can tell you whether this study is worth pursuing at all.

Contacts and locations

Locations

  • On-line only: https://asfalportpatientregistry.healthie.net

    RECRUITING

    Scottsdale, Arizona, 85261, United States

More trials for these conditions

Other studies related to the condition(s) this trial covers.