Specifically, the division’s areas of  kidney research include chronic kidney disease, ESRD, cystic kidney  disease, acute kidney injury, and kidney donation. NIDDK and the other ICs accomplish their missions primarily through  extramural research conducted by scientists and research personnel  working at universities, medical schools, and other research institutions. For example, a study on how diabetes leads to kidney disease would be  listed in the “diabetes” and “kidney disease” categories. NIH Funding for Kidney Disease Research Totaled $564 Million in Fiscal Year 2015; Funding Levels Varied across Leading Diseases and Conditions

NIH funding for biomedical research related to kidney disease totaled  approximately $564 million for 1,493 projects in fiscal year 2015—an  increase of 2.7 percent from fiscal year 2014. NIDDK provided the  majority (60 percent) of this funding; other ICs provided the remaining 40  percent of funding. Although  NIH is the primary federal agency involved in biomedical research on  kidney disease, there are other federal agencies that conduct and fund  research in this area. To provide context for the level of NIH research funding for kidney  disease, we also analyzed NIH funding levels for other leading diseases  and conditions in the United States—those that had high mortality, were  among the most prevalent chronic conditions, or both. In fiscal year 2015, NIH research funding varied across the  categories corresponding to the diseases and conditions in our analysis,  from $8 million for fibromyalgia to nearly $5.4 billion for cancer. The variation in research funding across the RCDC categories in table 1  reflects a range of factors, including differences in each IC’s mission,  congressional appropriations, and research priorities. NIDDK Obtains Input from the Broader Kidney Care Community to Develop its Research Priorities

NIDDK works with the broader kidney care community to develop its  kidney disease research priorities by using a web-based forum, hosting a  variety of meetings for kidney disease stakeholders, and by assessing its  research portfolio. NIDDK considers the community’s input in the context  of the institute’s ongoing work and its knowledge of the current state of  kidney disease research to develop funding announcements that target  high-priority research areas that are not being adequately addressed. According to NIDDK officials, NIDDK’s process for obtaining input from  the kidney care and scientific communities, and developing research  priorities is iterative by design to help ensure that the institute’s priorities  evolve to reflect the latest research developments and needs of the  communities. 2.) Representatives from six private kidney care groups we interviewed  generally agreed with NIDDK’s kidney disease research priorities as  published in the KRND; however, all of the organizations’ representatives  identified kidney disease topic areas that they said warranted increased  emphasis by NIDDK. NIDDK officials agreed that  improving kidney disease awareness and reducing kidney disease  disparities were important issues, and pointed out a variety of ongoing  NIDDK programs related to these topics. The department provided us with technical comments,  which we incorporated as appropriate. Appendix I: Leading Diseases and Conditions and their Corresponding National Institutes of Health Research Categories

To determine the leading diseases and conditions for our analysis of  National Institutes of Health (NIH) research funding, we identified  diseases and conditions that had high mortality, were chronic conditions  with high prevalence, or both. Appendix II: Federal Funding for Kidney Disease Biomedical Research by Agencies Other than the National Institutes of Health

The following is a summary of biomedical research on kidney disease  conducted by federal agencies outside the National Institutes of Health  (NIH): specifically, agencies that are part of the Kidney Interagency  Coordinating Committee (KICC), as well as the Patient-Centered  Outcomes Research Institute (PCORI). Two of the topic areas in fiscal year 2015 were  directly related to kidney disease: focal segmental  glomerulosclerosis—a disease in which scar tissue develops on the  parts of the kidneys that filter waste out of the blood; and polycystic  kidney disease—an inherited disorder in which clusters of cysts  develop primarily within the kidneys. Department of Health and Human Services.
Why GAO Did This Study

An estimated 17 percent of U.S. adults have chronic kidney disease—the most common form of kidney disease—a condition in which the kidneys are damaged and cannot filter blood sufficiently, causing waste from the blood to remain in the body. Kidney disease patients may progress to ESRD, a condition of kidney failure, which can cause death without dialysis or kidney transplant. In 2013, the Medicare program—which pays for ESRD treatment—spent $30.9 billion to treat approximately 530,000 patients. Given the high cost of kidney disease in terms of health consequences and federal spending, GAO was asked to examine how the federal government funds and prioritizes kidney disease research. This report describes (1) the level of NIH funding for biomedical research on kidney disease, and for other leading diseases and conditions; and (2) how NIDDK sets priorities for kidney disease research.
To describe NIH funding for research on kidney disease and other diseases and conditions, GAO selected leading diseases and conditions (based on mortality and prevalence) and analyzed their levels of research funding based on NIH data for fiscal year 2015. To describe how NIDDK sets priorities for kidney disease research, GAO reviewed documents—including those on research portfolios and strategic planning—from NIDDK, NIH, and other relevant federal agencies. Also, GAO interviewed agency officials and private kidney care groups representing a broad range of perspectives.

What GAO Found

The National Institutes of Health (NIH), within the Department of Health and Human Services, is the primary federal agency that conducts biomedical research on kidney disease, as well as various other diseases and conditions. NIH's budget—$30 billion in fiscal year 2015—mostly funds extramural research that supports research personnel working at universities, medical schools, and other institutions. The National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK)—one of NIH's 27 institutes and centers (IC)—has primary responsibility for kidney disease research. NIH funding for biomedical research on kidney disease in fiscal year 2015 was approximately $564 million—an increase of 2.7 percent from fiscal year 2014. NIDDK provided the majority (60 percent) of this funding, supporting a broad range of projects, such as chronic kidney disease, end-stage renal disease (ESRD) treatment, and kidney donation. GAO also reviewed NIH research funding levels for other diseases and conditions in the United States—those that are associated with high mortality or are among the most prevalent chronic conditions. GAO found that funding for fiscal year 2015 varied widely among these diseases and conditions—for example, from $28 million for emphysema to nearly $5.4 billion for cancer. This variation in funding reflects a range of factors, including each IC's mission, budget, and research priorities.
NIDDK obtains input from the broader kidney care community to develop its research priorities. To develop funding announcements that target high-priority research areas, NIDDK considers the kidney care community's input in the context of its ongoing work and its knowledge of the current state of kidney disease research. NIDDK's process for obtaining input from the kidney care community is iterative by design to help ensure that the institute's research priorities evolve to reflect the latest research developments and needs of the kidney care community.
Representatives from six private kidney care groups GAO interviewed generally agreed with NIDDK's kidney disease research priorities; however, some of the groups' members identified kidney disease topic areas they believe warrant more attention from NIDDK, such as a lack of kidney disease awareness in the general public. NIDDK agreed with this and other topics raised by the groups, and pointed out a variety of ongoing NIDDK programs that address these topics.
The Department of Health and Human Services provided technical comments, which GAO incorporated as appropriate.