ASF Alport Patient Registry

Part of paid clinical trials in Scottsdale, Arizona.

Sponsor
Alport Syndrome Foundation
Study ID
NCT06526741
Status
Recruiting
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Conditions

  • Alport Syndrome
  • Hereditary Nephritis
  • Thin Basement Membrane Disease

Eligibility Criteria

Sex
ALL
Age
0 Years - N/A
Healthy Volunteers
Not accepted

Interventions

  • Longitudinal data collection — OTHER
    This is an observational ambispective non-interventional registry collecting longitudinal real-world data only. There is no intervention.

Study Details

Alport Syndrome Foundation's (ASF's) Alport Patient Registry (the Registry) is open to individuals living with Alport syndrome in the United States (US) and US territories and outlying islands. The Registry welcomes participants of all ages who have a confirmed clinical diagnosis of Alport syndrome. A confirmed diagnosis could be obtained via genetic testing, biopsy, and/or from a medical professional's clinical assessment of the individual's symptoms and/or family history. Participants can have any form and stage of this disease to be eligible for inclusion in the Registry. Patient participation in the Registry is crucial to helping attract and advance research, understanding understudied aspects of the disease, and informing clinical trials that may lead to Alport syndrome therapies and/or a cure. The Registry is accessed through a secure, online application. Participants report their own health history in the Registry and are encouraged to update any changes, at most, every three months. The security of each participant's information is a top priority. Any detail that could identify an individual participant is kept confidential in the Registry and such data are de-identified to protect the participant's privacy. No electronic health records or social security numbers are requested by or connected to the Registry. A parent or legal guardian may consent to enroll a child/dren Alport patient(s) under the age of 18 years. An additional assent form is used for individuals ages 7-17. At age 18, participants will be required to re-consent as an adult if they choose to continue to participate in the Registry.

Key Dates

Start date
Aug 24, 2023
Status verified
Apr 2026
Primary completion
Aug 23, 2048
Completion
Aug 23, 2048

Study Design

Enrollment
2,500 participants (estimated)

Arms

  • Arm: Alport syndrome patients
    Patients with a confirmed diagnosis of Alport syndrome by a certified genetic counselor, treating physician, or nephrologist.

Primary Outcome Measure

Total number of enrolled participants [ Time Frame: 5 years ]

Central Contacts

Locations (1)

FacilityCityStateZIPSite coordinators
On-line only: https://asfalportpatientregistry.healthie.netScottsdaleArizona85261
Makabe Aberle, BS
[email protected]
4808003510
Lisa Bonebrake, BS
[email protected]
6199873522
Makabe Aberle, BS (PRINCIPAL_INVESTIGATOR)
Bradley A Warady, MD (SUB_INVESTIGATOR)

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On-line only: https://asfalportpatientregistry.healthie.net· Scottsdale, AZ

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