ASF Alport Patient Registry

Launched by ALPORT SYNDROME FOUNDATION · Jul 24, 2024

Keywords

ClinConnect Summary

The ASF Alport Syndrome Registry is a research project aimed at gathering important information about Alport syndrome, a genetic condition that affects the kidneys and can lead to kidney disease. This registry is open to anyone living with Alport syndrome in the United States and its territories, regardless of their age or the stage of their condition. To participate, individuals need to have a confirmed diagnosis, which can be done through genetic testing, a kidney biopsy, or an assessment from a medical professional. Parents or guardians can enroll their children under 18, and older teens will need to confirm their participation when they turn 18.

By joining the registry, participants will help researchers learn more about Alport syndrome, which is crucial for developing new treatments and possibly finding a cure. The registry operates securely online, allowing participants to share and update their health information every few months. Privacy is a top priority, as personal details are kept confidential and no sensitive information like social security numbers is collected. This is a great opportunity for individuals with Alport syndrome and their families to contribute to medical research and improve understanding of this condition.

Gender

ALL

Eligibility criteria

• 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:
• • \[none\]