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Teen Insight Baseline Survey 

First and foremost, thank you for choosing to provide better understanding of the needs and concerns of youth affected by Alport syndrome! This first, "baseline" survey may seem a bit dry in nature, but it's very important for clinical research and to help inform more exciting, patient-detailed questions coming up in future topic-based surveys. Remember, your answers can only be viewed by ASF staff and anything with your name will not be shared with your parents or anyone else without your direct, written consent. This survey should only take approximately 3 minutes of your time.
1.Please type your first and last name.
2.At what age were you conclusively diagnosed with Alport syndrome?
3.How were you conclusively diagnosed with Alport syndrome?
4.Were you ever misdiagnosed? List your misdiagnosed condition in the comment box if you know it.
5.Is anyone else in your family conclusively diagnosed with Alport syndrome? If so, please list their relationship to you below.
6.Have you ever connected with anyone else outside of your family with Alport syndrome? If so, how?
7.Do you have Alport-related hearing loss?
8.Are you aware of any Alport-related vision issues that you experience?
9.Approximately how many times do you see your pediatrician annually?
10.Approximately how many times do you see your nephrologist annually?
11.Have you ever been on dialysis?
12.Are you the recipient of a kidney transplant?