Patient & Care Partner Survey on Kidney Xenotransplantation 

Background on Kidney Xenotransplantation & Patient-Focused Meetings with the FDA

The National Kidney Foundation will host a meeting with kidney patients, their care partners, and the U.S. Food and Drug Administration (FDA). The focus of this meeting is to hear how patients and care partners view the experimental and potentially life-saving procedure of kidney xenotransplantation (pronounced zee-no transplantation), which involves transplanting pig kidneys into humans. Kidney xenotransplantation is still experimental,  meaning the procedure is not yet approved by the FDA for use in humans.

These patient-focused meetings are designed for the FDA to hear, directly from patients and care-partners, about their experiences and views on specific diseases and treatments, in our case, kidney xenotransplantation.

 

Before you take the survey, here is some information on kidney xenotransplantation:

Kidney xenotransplantation is the surgical procedure of transplanting a working kidney from an animal (in this case, a pig) into a person. While the procedure is still experimental, it could be an alternative to traditional human kidney transplantation, which has a waitlist of over 100,000 people.


Pigs are the most promising source of animal kidneys for xenotransplantation because pigs:

  • are widely available
  • have kidneys that are similar to human kidneys in size and function
  • have a relatively low risk of transferring disease

Clinical trials in humans have not yet begun, but will be important to show that kidney xenotransplantation is safe and effective. Successful clinical trials and approval from the FDA will be required before routine use in humans.


Before patients agree to either enroll in a clinical trial for kidney xenotransplantation or receive a kidney xenotransplantation, they must consider numerous factors and make judgements based on their experiences with kidney disease. We want to know your views on these considerations. 


They include:

  • Safety considerations such as: Infection risk and possible organ rejection
  • Time on the waitlist and shortage of available human kidneys (~100,000 people on the waitlist, only about ~35,000 kidney transplants occur every year)
  •  Animal welfare considerations
  • Religious, spiritual, and cultural considerations
  • Quality of life considerations (pig kidney vs continued dialysis)
  • Patient privacy in clinical trials, including a commitment to a lifetime of routine monitoring

Rectangle: Rounded Corners: New page PAGE #2For more information, please visit our webpage: NKF Website: Kidney Xenotransplantation


Please click "Next Page" to complete the survey.

This survey is for patients and their care partners who have lived with or are living with kidney disease. We also want to hear from family members of someone who has passed away while awaiting a transplant.

 

If both a patient and care partner are available to complete the survey, please complete one survey per person (two separate surveys, one for the patient and one for the care partner).

 

Your responses to the survey questions will not be shared.

 

The survey should take about 10 minutes to complete.




Patients, please answer the following questions about yourself.

Care partners, please answer the following questions about your loved one unless noted otherwise.



The following questions are about the patient who is experiencing or has experienced kidney disease. Care partners, please answer the following questions about your loved one (unless noted otherwise):















Clinical trials for kidney xenotransplantation in humans have not yet begun. These trials will be important to show that kidney xenotransplantation is safe and effective. Successful clinical trials and approval from the FDA will be required before routine use in humans.

We want to hear about your acceptance and concerns for Xenotransplantation.










Overall, what are your greatest concerns AND hopes for kidney xenotransplantation (if you or your loved one needed a new kidney?). Please elaborate on both your concerns and hopes:











This meeting is for the FDA to hear directly from patients and care partners about your views on kidney xenotransplantation based on your experiences with kidney disease, dialysis, and traditional kidney transplantation.

The meeting will take place at the Bethesda Marriott (5151 Pooks Hill Road, Bethesda, MD, 20814) on Thursday, November 9th 2023

Meeting website: www.kidney.org/el-pfdd-xeno






Please provide your contact information below so we can contact you about the upcoming EL-PFDD meeting or future initiatives on Kidney Xenotransplantation.












THANK YOU FOR TAKING THIS SURVEY!

Your responses will help us to plan an impactful EL-PFDD meeting.


If you would like to receive updates on the EL-PFDD meeting on Kidney Xenotransplantation, please register here. Both In-person and live-stream attendees need to register in order to receive updates.


If you have questions about this survey, the EL-PFDD meeting, or the NKF’s Xenotransplantation activities, please reach out to: heather.murphy@kidney.org or visit our meeting site: www.kidney.org/el-pfdd-xeno

Contact Information