Status:
RECRUITING
ASF Alport Patient Registry
Lead Sponsor:
Alport Syndrome Foundation
Collaborating Sponsors:
Pulse Infoframe Inc
Conditions:
Alport Syndrome
Thin Basement Membrane Disease
Eligibility:
All Genders
Brief Summary
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 Re...
Detailed Description
ASF is an Alport syndrome patient-led 501(c)(3) non-profit based in the US. ASF regularly communicates with thousands of Alport syndrome patients, caregivers, researchers, clinicians, and industry sta...
Eligibility Criteria
Inclusion
- 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.)
Exclusion
- \[none\]
Key Trial Info
Start Date :
August 24 2023
Trial Type :
OBSERVATIONAL
Allocation :
ESTIMATED
End Date :
August 23 2048
Estimated Enrollment :
2500 Patients enrolled
Trial Details
Trial ID
NCT06526741
Start Date
August 24 2023
End Date
August 23 2048
Last Update
January 15 2025
Active Locations (1)
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1
On-line only: https://asfalportpatientregistry.healthie.net
Scottsdale, Arizona, United States, 85261