- 2023 Annual Meeting
- The PCORI Strategic Plan
- Clinical Effectiveness and Decision Science
- Dissemination and Implementation
- Evaluation and Analysis
- Healthcare Delivery and Disparities Research
- PCOR Infrastructure & Innovation
- Our Vision & Mission
- Financial Statements and Reports
- The PCORI Strategic Plan
- Board of Governors
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Past Opportunities to Provide Input
- Stakeholder Views on Components of 'Patient-Centered Value' in Health and Health Care (2023)
- 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
People with the gastrointestinal disorder Crohn’s disease often worry about leading a normal life. Kathleen Baker has gone far beyond that, all the way to the Olympics, where she took a silver medal Monday in the 100-meter backstroke.
As noted in a recent story in the New York Times, Baker, 19, has been treated for Crohn’s disease for the past four years from Michael Kappelman, MD, MPH, a gastroenterologist at the University of North Carolina, Chapel Hill, and a double PCORI awardee.
“My goal for treating patients is to enable them to live out their lives fully. That can mean completing school, succeeding in their career, getting married, and having kids,” he says. “But Kathleen is the second-best swimmer in the world! It really is quite remarkable.”
Crohn’s disease affects 600,000 Americans and causes abdominal pain and diarrhea. Some patients may require hospitalization or undergo one or more surgeries. Developing new pharmacological treatments and comparing the effectiveness of existing treatments are active areas of research, some of which PCORI is funding.
One of Kappelman’s studies will compare a treatment that blocks inflammation versus the same treatment in conjunction with a drug that tamps down the immune response. The study will enroll patients who are less than 21 years old. Another PCORI-funded project Kappelman leads already has enrolled more than 14,000 members to provide their data for use in research studies of Crohn’s disease. This patient-powered network is part of PCORnet, the National Patient-Centered Clinical Research Network, a PCORI initiative to harness the power of data and unique partnerships to conduct important health research faster, more efficiently, and at lower cost than was previously possible.
Baker went public with her experience with Crohn’s in the July New York Times article. Kappelman says that other patients and their families have already told him that Baker has inspired them. Indeed, there are a number of people living with Crohn’s disease who have become competitive athletes. But for many others, the goal is simply living a more normal life.
“There are a large number of patients who go through life feeling less than perfect,” Kappelman says. “We desperately need new and better treatments, and we desperately need to know how to more effectively use the treatments that we already have.”
PCORI congratulates Baker on showing what a person with Crohn’s disease can do with a lot of hard work—and the right treatments given her individual circumstances. And we celebrate with Kappelman, who is using PCORI support to provide other patients and their clinicians with the reliable, useful evidence they need to make better-informed healthcare decisions.
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