Registry for All Alport Patients in the United States and U.S. Territories and Outlying Islands
With rare diseases, the #1 thing patients and caregivers can do to advance research that may lead to potential treatments and/or a cure is to participate in a patient registry. Participation is private, free of charge, and completely voluntary.
A patient registry scientifically and uniformly collects information about a group of patients with the same condition for research purposes.
The ASF Alport Patient Registry, which launched August 24, 2023, is funded and administered by Alport Syndrome Foundation (ASF). It collects information through brief surveys in a secure online platform. Combined, it should take 30 minutes or less to complete the surveys the first time, and less time when returning to update some of the questions. The platform allows for participants to quickly and easily upload images or PDF documents of genetic test results and audiograms.
To get prepared for the registry, ASF has compiled some quick notes and tips to help simplify the process of inputting your data. Click below to view our Guide.
Frequently Asked Questions About the Patient Registry
Click on any of the questions below to expand the text box and view answers.
Who can participate?
The registry is open to all individuals living with Alport syndrome in the U.S., at all ages and stages of disease. Whether individuals are recently diagnosed or living a post-kidney-transplant life, data from every Alport patient is impactful for research. Parents can also enroll their child/children under the age of 18 with Alport syndrome. ASF is dedicated to sustaining and growing the ASF Alport Patient Registry, focused on obtaining self-reported information from as many patients as possible.
Who needs this data?
Researchers need to learn about patients’ real-world experiences with Alport syndrome over time. Pharmaceutical companies that are working to develop potential new drug therapies for our disease also need this data to support new applications to the FDA. Following patients’ documented experiences over an extended period of time is extraordinarily valuable for understanding our rare disease.
How is my privacy protected?
The ASF Alport Patient Registry data is deidentified, meaning that researchers are not able to associate an individual’s name with any specific survey responses or information. Likewise, no one at ASF has access to individual records. All data is seen as cumulative responses to survey questions.
What kinds of data are collected?
In addition to information about kidney disease, medications, and genetics, the ASF Alport Patient Registry captures data on understudied aspects of our disease such as hearing loss, eye conditions, pregnancy complications, and much more. Digital files, such as genetic testing results and audiograms, can also be directly uploaded to the platform at any time during or after enrollment.
What should I have available before I enroll?
If available, having the following documents at the ready can significantly decrease the time needed to complete the survey questions: genetic test results, most recent lab report results, and any audiogram reports.
How do I participate in the ASF Alport Patient Registry?
Click here to begin first-time enrollment in the ASF Alport Patient Registry. If you previously enrolled in the NKF Patient Network – Alport Syndrome, you can log into the updated ASF Alport Patient Registry (using your former credentials) at this link.
What if I'm currently enrolled in the NKF Patient Network - Alport Syndrome?
Participants in the former NKF Patient Network – Alport Syndrome will receive an email from [email protected] on August 24, 2023. 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.
ASF Executive Director Lisa Bonebrake shares an important message about our updated patient registry.
Click the “CC” button for closed captioning.
Add [email protected] to your email contacts to avoid missing important communications about your participation in the registry.
For technical questions or more information, contact [email protected].
Benefits of Patient Registry Enrollment
- Have your voice heard by scientists and doctors studying Alport syndrome
- Help document Alport syndrome genetic mutations.
- Report understudied aspects of Alport syndrome.
- Get notified on how to join the latest clinical trials.