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APOL-1 Patient Survey

PATIENT SURVEY FOR EXTERNALLY LED PATIENT-FOCUSED DRUG DEVELOPMENT MEETING ON APOL1 KIDNEY DISEASE
The National Kidney Foundation (NKF) and NephCure will host a meeting to bring the voice of people living with APOL1 kidney disease (AKD) to the US Food and Drug Administration (FDA) and pharmaceutical companies developing drugs for this disease.

This is an important meeting for the AKD community: it will inform the FDA and pharma about patients’ experiences living with AKD and what they need in new medicines.
The meeting is called an Externally Led Patient-focused Drug Development (EL-PFDD) Meeting on APOL1 Kidney Disease.

Please complete the survey below so your input can be used to plan this meeting.
THIS SURVEY IS FOR PEOPLE LIVING WITH APOL1 KIDNEY DISEASE AND THEIR PARENTS AND CARE-PARTNERS

PARENTS AND CARE-PARTNERS: If necessary, please help your child or patient complete the survey.
By taking this survey, you understand and agree that:
  • NKF and NephCure maintain and comply with strict policies to keep patient information confidential
  • NKF and NephCure will keep your information within NKF and NephCure
  • If results from the survey are reported outside of NKF or NephCure, your identification will be removed and results will be described only as group responses, with no identifying information.
This survey should take about 10 - 15 minutes to complete

If you need to exit the survey before you finish, your responses will be saved and you can re-enter later, but you must re-enter using the same device you used originally.