The cause of hearing loss in Alport syndrome remains unproven and understudied, keeping potential therapies from being unlocked. One thing we can do as a community to change this is to collect hearing loss data on Alport patients. The Alport Syndrome Treatments and Outcomes Registry (ASTOR) in the U.S. is now able to securely and privately accept digital audiograms (hearing test results). Collection of audiograms over time is particularly valuable data that can potentially inform new understanding of Alport-related hearing loss.
If you have PDFs of your audiograms stored digitally, just attach in an email to the address below. If you have hard copies, just snap a photo from a smart phone and attach in an email.
If not, simply contact your audiologist’s office; most can email you digital PDF copies the same day. Each time you have a new audiogram, remember to share with ASTOR to update your file.
PDF or JPG copies of audiograms can be emailed securely to [email protected]. An encrypted email can be sent directly to you to attach audiograms, if requested. Questions can also be directed to [email protected].
If you have not enrolled in ASTOR, please learn more about the registry and join via the link below as your patient data is private, secure, and critical for research: