- The PCORI Strategic Plan
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- The PCORI Strategic Plan
Evaluating Our Work
- PCORI's Goals (2013)
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Past Opportunities to Provide Input
- PCORI's Proposed Research Agenda (2021-2022)
- Proposed National Priorities for Health (2021)
- Proposed Principles for the Consideration of the Full Range of Outcomes Data in PCORI-Funded Research (2020)
- Proposed New PCORI Methodology Standards (2018)
- Data Access and Data Sharing Policy: Public Comment (2017)
- Proposed New PCORI Methodology Standards (2017)
Comment on the Proposed New and Revised PCORI Methodology Standards (2016)
- 1. Standards for Formulating Research Questions
- 10: Standards for Studies of Diagnostic Tests
- 12. Standards on Research Designs Using Clusters
- 13: General Comments on the Proposed Revisions to the PCORI Methodology Standards
- 2: Standards Associated with Patient-Centeredness
- 3: Standards for Data Integrity and Rigorous Analysis
- 4: Standards for Preventing and Handling Missing Data
- 5: Standards for Heterogeneity of Treatment Effects
- 6: Standards for Data Registries
- 7: Standards for Data Networks as Research-Facilitating Structures
- 8. Standards for Causal Inference Methods
- 9. Standards for Adaptive Trial Designs
- Peer-Review Process Comments (2014)
- Draft Methodology Report Public Comment Period (2012)
- Past Opportunities to Provide Input
Healthy kidneys are key to healthy bodies—acting as a filter so that the nutrients we need to stay in our bloodstream are kept circulating while waste products are released in the urine. During March, National Kidney Month, we pay special attention to kidney health and recognize the impact of kidney disease.
Understanding Chronic Kidney Disease
Many people in the United States today are living with suboptimal kidney health. Thirty-seven million adults in the United States are living with chronic kidney disease (CKD), meaning their kidneys have been damaged over the course of their lifetimes and are no longer filtering the body’s blood the way they should. That’s 15 percent, or one in seven adults in the United States living with CKD—and 90 percent of this group don’t know they have it. The disease is progressive, so it gets worse over time as damage and strain to the kidneys accumulate over the life course. The Centers for Disease Control and Prevention (CDC) estimates that close to two in five adults ages 65 and older are living with CKD.
Treatment for CKD is of vital importance, and often urgent. If left untreated, CKD can lead to kidney failure, at which point a person will need either dialysis (a medical procedure through which blood is regularly artificially filtered, given the kidneys’ inability to do so), or replacement of a kidney through organ transplantation. The longer a person with kidney damage goes without diagnosis and treatment, the more limited treatment options become.
Diabetes, high blood pressure, and heart disease are all among the leading risk factors for CKD. Preventive measures like proper diet, exercise, and hydration habits can help reduce the risk of CKD. Even after a CKD diagnosis, healthy eating, physical activity, and other protective habits can prevent progression to kidney failure. There are also several treatment options available for both CKD and kidney failure.
The Role of Comparative Clinical Effectiveness Research
This means there are many choices facing each person living with kidney disease, their healthcare teams, and their caregivers. PCORI funds research to help people understand how well different treatment approaches for CKD work compared to one another, and which options might be best suited to different people. Comparative clinical effectiveness research (CER) produces evidence that can guide patients and their teams to the best options for their unique circumstances.
As of February 2022, PCORI has awarded $100 million to support CER related to kidney disease, supporting 24 different projects.
Comparing CKD Treatment Options
In one PCORI-funded study in Pennsylvania, a team of researchers compared various methods to support patients living with CKD as well as their caregivers. One group was provided with a book detailing the causes of and treatments for CKD; another group received the book, in addition to six months of peer mentoring conducted online; and a third group received the book and participated in six months of peer mentoring conducted in person.
After 18 months from the start of the study, patients who participated in online peer mentoring reported better health and quality of life compared to those who received the book but did not participate in peer mentoring. Participants in this group were also more involved in their health care. Those who participated in peer mentoring face-to-face were found to have better scores in kidney disease symptoms. Studies like these can help both clinicians and patients understand more about different treatment and support options.
Increasing Access to CKD Education
CER can also be useful for finding the best solutions for patients according to the unique context of their home communities. One research team, with support from PCORI, worked with members of the Zuni Indian community of the Zuni reservation in rural New Mexico who were living with CKD. The team created an in-home program for education on kidney disease. Compared to those who received only institutional care, participants of the in-home program showed better knowledge, skills, and confidence to manage kidney disease; better quality of life in relation to mental health; and lower weight and blood sugar levels.
Like the Zuni community, many communities do not have easy access to readily available health care. This lack of access presents additional challenges in managing an already-challenging condition like CKD. PCORI supports research to meet people where they’re at—even in their own homes.
Rigorous research, heavy involvement from patient and clinician participants, and dedicated effort to ensure results of such research make their way to those who need them are essential to creating healthier lives for people living with CKD. With these efforts, each individual can be supported by a patient-centered community to help improve their kidney health and the quality of their lives.
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The Patient-Centered Outcomes Research Institute sends weekly emails about opportunities to apply for funding, newly funded research studies and engagement projects, results of our funded research, webinars, and other new information posted on our site.