“Patient Navigator Program” Participant Consent Form

You are being invited to take part in a program from the National Kidney Foundation that will provide you with support towards finding a living kidney donor.

We are asking you to read this because you have expressed interest by providing your name and contact information to NKF. Please read this form carefully. If you have any questions, please contact Kelley Canavan at Kelley.canavan@kidney.org before agreeing to take part in this program.

The purpose of this program is to help patients with advanced kidney disease to develop better ways to share their story with friends and community members. We will teach you tools and provide suggestions for ways to communicate your need for a living donor kidney, in person, on social media, and though community organizations. These techniques have helped thousands of patients find kidney donors.

Patients who are about to get evaluated, going through evaluation or who are already on the transplant waitlist, along with their friends and family members.

If you agree to be a part of this program, you will:

• Work with a trained navigator (living donor recipient) by having 4 phone or video calls to write and share your story to find a living kidney donor.
• Complete several, quick surveys after each call with your Navigator, as required by the National Kidney Foundation (NKF) to help us understand if the education and support provided to you has been beneficial and to help NKF improve the program for kidney patients.

There is minimal risk of loss of confidentiality despite our efforts to maintain security of information. NKF uses commercially reasonable efforts to ensure that web-based programs are password protected and will not be recorded by or on behalf of NKF. You will complete all surveys online and will be asked to record your identity by the same username that you use when you sign up for the program. No private or identifying information will be stored on the online program platform.

The benefits to you include:

• Receiving individualized support by a navigator to help you walk through your identified steps to increase the chances of a living donor stepping forward
• Increasing your understating of transplant and living kidney donation so that you can better answer questions from family or other possible donors
• Hearing from other waitlisted kidney patients and families going through similar experiences with writing and sharing their story for a living donor

Confidentiality and the patient right to privacy are legal and ethical rights. Navigators, Participants, NKF Programs Team, and anyone else involved in the National Kidney Foundation’s Patient Navigator Program have the responsibility to protect patient confidentiality. This means that medical information shared by any patient (navigator or participant) or included in discussions and/or navigator or participant interactions, evaluation and navigator and participant, or with NKF’s Programs Team is considered private and should not be discussed with anyone outside the Patient Navigator program. Discussions about a Navigator and participant should not be conducted in public areas.

You will receive the following:

• $10 after your completed 1st call- Welcome call
• $10 after your completed 2nd call- Starting your Story call
• $10 after your completed 3rd call- Sharing your Story call
• $10 after your 4th and final call- Wrap up Call
• $10 after completing the Program Evaluation

There is no cost for patients or family members to participate in the program.

You may contact Kelley Canavan with NKF at Kelley.canavan@kidney.org