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.

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* 1. Please type your first and last name.

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* 2. At what age were you conclusively diagnosed with Alport syndrome?

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* 3. How were you conclusively diagnosed with Alport syndrome?

Kidney biopsy

Skin biopsy

Genetic Testing (Blood or Saliva)

I'm not sure

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* 4. Were you ever misdiagnosed? List your misdiagnosed condition in the comment box if you know it.

Yes

(Please specify your misdiagnosis, if applicable)

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* 5. Is anyone else in your family conclusively diagnosed with Alport syndrome? If so, please list their relationship to you below.

Yes

(Please list other affected family members relationship to you - mom, dad etc.-, if applicable)

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* 6. Have you ever connected with anyone else outside of your family with Alport syndrome? If so, how?

Yes

(Please specify connection method. Email, Social Media, ASF Event or related meeting etc.)

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* 7. Do you have Alport-related hearing loss?

Yes, but I do NOT wear hearing aids

Yes, and I DO wear hearing aids

I've never been tested for hearing loss

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* 8. Are you aware of any Alport-related vision issues that you experience?

Yes

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* 9. Approximately how many times do you see your pediatrician annually?

Once a year

Twice a year

Three times a year

Four times a year

Over five times a year

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* 10. Approximately how many times do you see your nephrologist annually?

Once a year

Twice a year

Three times a year

Four times a year

Over five times a year

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* 11. Have you ever been on dialysis?

I have never been on dialysis

I have performed hemodialysis at a dialysis clinic or hospital

I have performed hemodialysis at home

I have been on peritoneal dialysis

I have performed both hemodialysis and peritoneal dialysis

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* 12. Are you the recipient of a kidney transplant?

I have never received a transplant

I received a cadaver transplant

I received a living donor transplant

I have had more than one type of transplant

Additional Transplant Type Comments?