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MAY New PCORI Award Incorporates Kidney Patient Expertise


New PCORI Award Incorporates Kidney Patient Expertise

Duke University Award Involves AAKP as Patient Stakeholder

The Board of the Patient-Centered Outcomes Research Institute (PCORI) recently awarded Duke University a major five-year grant for their program “Putting Patients at the Center of Kidney Care Transitions.” The American Association of Kidney Patients (AAKP) is proud to announce they will serve as a patient stakeholder in the grant.

The goal of this project is to change the health system to improve care patients receive as they transition through earlier stages of kidney disease toward kidney failure. The project will study whether these changes lead to patients’ improved health and well-being. The project will be implemented within the Geisinger Health System across Pennsylvania.

The Duke University project Principal Investigator Ebony Boulware, MD, Phd, worked with project Co-Investigator, Teri Browne, PhD of the University of South Carolina and a member of the AAKP Board of Directors, to identify kidney patients across the country interested in assisting the project.

AAKP President Paul T. Conway stated, “We are very pleased with this PCORI award to Duke University and the promise it holds for patients with advanced chronic kidney disease as they make the difficult transition to kidney failure. AAKP is intensely focused on improving patient lives through medical research and policy advocacy and we are quite proud of the efforts our Board member, Dr. Teri Browne, played in contributing to this grant award.”

The PCORI awards are designed to fund comparative clinical effectiveness research (CER) designed to answer questions most important to patients and those who care for them.

The PCORI Board of Governors announced the Duke University grant involving AAKP, along with approval of 70 other awards totaling more than $114 million over multiple years.

People in kidney failure have two primary medical treatment options available to prolong their lives: dialysis or kidney transplantation. Each treatment method is distinct, and each has its own pros and cons. Doctors often are unsure of the best time to start preparing patients for their eventual kidney failure. In many cases, when kidney failure occurs, patients feel blind-sided, are unaware of how ill they truly are and have a very limited understanding of their treatment options.

Kidney care, including dialysis, costs the American taxpayer over $35 billion per year, an estimated 7% of the Federal budget. An estimated 26 million Americans suffer from chronic kidney disease (CKD), including more than 600,000 individuals who suffer from complete renal failure which includes those on dialysis or have a functioning kidney transplant. Today, there are 109,000 people on the kidney transplant waiting list.

AAKP is the nation’s oldest independent kidney patient advocacy organization. For more than 45 years, AAKP has been dedicated to improving the quality of life of kidney patients through education, advocacy and the fostering of patient communities. The programs offered by AAKP inform and inspire patients and their families to better understand their condition, adjust more readily to their circumstances, and assume more normal, productive lives in their communities.