ASF Alport Patient Registry
Recruiting now
Conditions studied: Alport Syndrome, Thin Basement Membrane Disease, Hereditary Nephritis
In brief
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 facts
- Study ID
- NCT06526741
- Run by
- Alport Syndrome Foundation
- People needed
- 2500
- Starts
- 2023-08-24
- Expected to finish
- 2048-08-23
- Last updated by the study team
- 2026-04-14
Who can join
Age: any. Sex: any. Healthy volunteers: not accepted.
You may qualify if…
- Confirmed diagnosis of Alport syndrome by a certified genetic counselor, treating physician or nephrologist.
- 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.)
- Must reside in the USA or US territories and outlying islands. (This criterium may change at an as-yet undetermined future date.)
You may not qualify if…
- [none]
Where it is running
- On-line only: https://asfalportpatientregistry.healthie.net — Scottsdale, Arizona, United States (enrolling)
Full record on ClinicalTrials.gov
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