- The PCORI Strategic Plan
- Clinical Effectiveness and Decision Science
- Dissemination and Implementation
- Evaluation and Analysis
- Healthcare Delivery and Disparities Research
- Research Infrastructure
- Our Vision & Mission
- Financial Statements and Reports
- The PCORI Strategic Plan
- Board of Governors
- Methodology Committee
- Authorizing Law
Evaluating Our Work
- PCORI's Goals (2013)
- Planning Our Organizational Learning, Reporting Our Results
- Evaluating Key Aspects of Our Work
- PCORI Evaluation Group (PEG)
- PCORI's Advisory Panels
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- Stakeholder Views on Components of 'Patient-Centered Value' in Health and Health Care: A Request for Input
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)
- Executive Team
- Office of the Executive Director
- Program Support and Information Management
- Staff Conflict of Interest Disclosures
More than 100,000 people in the United States have sickle cell disease—a group of inherited red blood cell disorders that affect blood flow and the body’s use of oxygen.
Sickle cell disease causes red blood cells to become crescent, or sickle-shaped, instead of round and disc-like. Sickle-shaped cells do not move through the body as easily as normal cells and can lead to a variety of health conditions including stroke, lung problems, and intense, debilitating pain.
The PCORI-funded CaRISMA Study is comparing two strategies to help patients with sickle cell disease manage pain. More than 300 adults with sickle cell disease and chronic pain nationwide have consented to enroll into the study. One group of patients has been assigned by chance to receive cognitive behavioral therapy and another group is receiving pain education about sickle cell disease and its symptoms. Both groups also have access to health coaches.
Charles Jonassaint, PhD, MHS, one of the trial’s principal investigators, notes there has been considerable interest from patients, family members, caregivers, clinicians, and the sickle cell disease advocacy community regarding the study.
“We have been hearing from our clinical and community partners that the patients engaged in the trial are reporting a benefit, with some patients even stating that they require less opioid pain medication because of the study,” Jonassaint says. He adds that the health coaching component of the project has been a study highlight and is already meeting a critical need.
Jonassaint and his team have been particularly surprised by the number of study participants reporting serious mental health concerns.
“About 18 percent of the enrolled patients have reported thinking about death or hurting themselves. We believe this is partly due to the pandemic and also the challenge of managing a chronic condition in the midst of racial and economic tensions,” explains Jonassaint.
Fortunately, patients enrolled in the study have felt emotionally supported by CaRISMA health coaches and other team members. “Many of our participants have said that having someone to talk to has already had a significant impact on their quality of life,” Jonassaint notes.
Study enrollment remains underway, and the trial is expected to be completed in 2024.
2022 PCORI Annual Meeting
Join us virtually on October 26-27 as we explore a variety of topics, including rare diseases and telehealth. Programming includes a keynote by Ashley Valentine, MRes, a PCORI Advisory Panel member and President of Sick Cells, an organization she co-founded with her late brother Marqus, who was diagnosed with sickle cell disease at six months old. In her address, Valentine will share her experience in the rare disease community as a patient advocate and how it shaped her approach to patient engagement in research and patient community involvement.
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