Those Alport syndrome patients ages 13-22 are invited to participate in an important new ASF project! The “Pediatric Alport Patient Insight Campaign” is currently being developed as a resource for pediatric nephrologists and Alport families. We’re envisioning this as a series of documents, videos, and other communications.
The project was initiated at the suggestion of one of the foremost pediatric nephrologists in the country, Dr. Bradley Warady, who is also volunteering to help on this campaign. Dr. Warady feels strongly that doctors and families would benefit from understanding the experiences, insights, and suggestions of pediatric Alport patients. This information could improve communication with physicians as well as treatment and outcomes.
You’re invited to join us in this process. Please note parental consent is necessary for those under the age of 18.
In July 2021, Insights from the first 25 participants were compiled into a downloadable report. The report will be updated as more Alport patients share their journeys with ASF Staff.
If you choose to participate in this ongoing project, responsibilities will include:
-Completing several brief, online surveys about their experience living with Alport syndrome. Survey results will be shared collectively and anonymously, with no identifying personal data. However, ASF Staff Lisa Bonebrake and Kevin Schnurr will have access to each respondent’s survey answers and who provided them.
-Joining ASF Staff moderated teleconferences and/or video conferences with some/all of the patients involved in the project and/or Dr. Warady and other medical professionals. These virtual meetings will be recorded for staff to document notes, however they will not be shared publicly.
-Sharing experiences and insights openly and candidly with the intention of capturing true experiences to help others.
Benefits of participation:
-Virtually meet other youth affected by Alport syndrome.
-Helping other Alport patients and families.
-Potentially having input included formally in the design and evaluation of clinical trials.
-Service/volunteer hours as wanted/required for school.
-A research-focused, multi-tiered medical education project for college applications and/or resume.
Survey 1 Baseline
Survey 2 Treatment
Survey 3 Mental Health (1/2)
Survey 4 Mental Health (2/2)
If you have any questions, or would like to participate in the Insight Campaign, please email Kevin Schnurr or Lisa Bonebrake at [email protected].