Patients to Lead National Research Priorities for Kidney Disease

The National Kidney Foundation announced today that it will be organizing the first-ever Patient Centered Outcomes Research Stakeholders’ Conference.  This conference will bring together 100 patients, caregivers, stakeholders and academics to identify patient-centered research priorities—and challenges—for kidney disease.  It will allow patients with chronic kidney disease, for the first time, to be at the forefront of deciding national research priorities.  The conference will be held in conjunction with the National Kidney Foundation Spring Clinical Meetings in Orlando during April 2017.

The Stakeholders’ Conference will be facilitated by both a patient and researcher and will feature patient, caregiver and researcher panel discussions and break-out group sessions.  Attendees will gain insight into the experiences of patients, caregivers and researchers; learn more about the importance of patient centered outcomes research (PCOR), and identify best practice strategies for actively engaging patients in kidney disease research.

“The Stakeholders’ Conference will help address the gap in kidney disease research,” said Kathryn Pucci, vice president of education for the National Kidney Foundation (NKF).  “Our goal at NKF is to transform the process in which the healthcare community views patients from passive, to active and engaged partners in the healthcare decision making process, and centers them as key collaborators in research and in policies which directly impact them.”

As part of NKF’s commitment, NKF has also committed to provide a minimum of $40,000 towards funding a 2018 Kidney Disease Patient Centered Research Grant.  The grant will focus on the top kidney disease priorities identified by patients at the Conference.

The Stakeholders Conference is funded through a Patient-Centered Outcomes Research Institute (PCORI) Eugene Washington PCORI Engagement Award.  If you have questions, or are interested in participating in the Conference, please visit

About nkf _advocacy

The National Kidney Foundation's advocacy movement is for all people affected by CKD, transplant candidates and recipients, living and potential donors, donor families and caregivers. We empower, educate and encourage you to get involved on issues relating to CKD, donation and transplantation.
This entry was posted in Uncategorized. Bookmark the permalink.

4 Responses to Patients to Lead National Research Priorities for Kidney Disease

  1. Pingback: Patients to Lead National Research Priorities for Kidney Disease | kidneystoriesblog

  2. Reblogged this on kidneystoriesblog and commented:
    Good article, what can I do to help?

  3. Happy to be a part of this

  4. Bill Hahn says:

    I am a kidney recipient, former D1 diabetic, former hemm-dialysis patient and CKD advocate. I live in Orlando and co-founded the Cocoa Beach Kidney Walk in 2012. Which has raised 200k for dialysis patents. I work closely with Congressman Bill Posey our district 8 representative in Florida on progressive legislation for the long-term quality of life for kidney patients. . Congressman is also a member of the National Kidney Council in Washington. How can I get involved ?

Your thoughts:

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s