Registry for All Alport Patients in the United States
***The ASF Alport Patient Registry is currently being updated and is temporarily closed at this time.***
MARCH 19, 2023 UPDATE: As of March 2023, the Alport patient registry is now fully funded and administered solely by Alport Syndrome Foundation (ASF). With this change, the registry, open to Alport patients of all ages, is now officially titled, ASF Alport Patient Registry.
In March 2022, this registry was initially created in partnership with the National Kidney Foundation (NKF) as part of the NKF Patient Network. NKF is moving in a different direction and our organizations have mutually agreed to end our partnership on this particular project.
ASF will continue supporting data collection (for adult and pediatric patients) on the current healthie.net platform overseen by Pulse Infoframe, which has housed patient-reported data from Alport syndrome patients and caregivers since March 2022.
ASF is pleased to sustain and grow its registry on the current Healthie.net platform focused on collecting self-reported information from patients rather than electronic health records. ASF is confident in the state-of-the art privacy and ease of use of this platform, and with Pulse Infoframe’s expertise in maintaining rare disease registries.
The ASF Alport Patient Registry will capture data that’s specifically relevant to Alport syndrome, including currently understudied aspects of our disease. Digital files, such as genetic testing results and audiograms, can also be directly uploaded to the platform at any time after enrollment.
The data collected goes beyond numbers on a spreadsheet – researchers want to hear patients’ experiences living with Alport syndrome. Your enrollment helps shape the future care of Alport patients!
***The Registry is currently being updated and is temporarily closed for current enrollees / first-time enrollment at this time.***
Participation in the ASF Alport Patient Registry is voluntary, free of charge, and open to all Alport patients in the United States (a parent can consent and serve as proxy for enrolling a child/children).
Currently Enrolled as of March 2023?
You do not have to do anything at the moment. ASF is updating the registry to capture a few additional Alport-related questions such as medications patients are taking, which makes the data even more powerful for research. During this update period, current registry enrollees will not be able to log in to the platform. This work will be completed in the new few weeks. Participants will receive an email from [email protected] when these updates are finalized. At that time, we will encourage you to log in and update your patient data / your child/ren’s patient data. Please add this email address to your contacts so that our messaging reaches your inbox correctly.
Interested in First-Time Enrollment?
ASF will share on our website, social media, and via email to free members when the ASF Alport Patient Registry is live and ready to accept new patient registrants.
Those who choose to enroll should promptly add “[email protected]” to their email contacts to avoid missing critical communications.
Technical questions can be directed by email: [email protected]
Benefits of Patient Registry Enrollment
- Be included in research projects around the world;
- Have your voice heard by scientists and doctors studying Alport syndrome;
- Get notified on how to join the latest clinical trials;
- Help document Alport syndrome genetic mutations; and
- Report understudied aspects of Alport syndrome