PCORnet® Webinar: Enhancing Collection, Integration of Patient-Generated Health Data
PCORI’s series of convenings to explore ways in which the data infrastructure for PCORnet®, the National Patient-Centered Clinical Research Network, might be enhanced continues on December 14. This webinar, the second in the series, will focus on enhancing the PCORnet data infrastructure for additional integration and collection of patient-reported outcomes (PROs) and other patient-generated health data (PGHD). Topics include the current state of PRO data and PGHD collection by PCORnet Network Partners, opportunities to improve accessibility and quality of PRO data within the PCORnet Common Data Model, and short-term and long-term priorities to expand PRO data availability.
Hosted with NORC at the University of Chicago, the webinar will share perspectives from PCORnet Network Partners, PCORI, NORC, and other thought leaders.
Register for the webinar
Giving Voice to Community Experience through Research
The 2021 PCORI Virtual Annual Meeting offered a chance to connect and hear from stakeholders like Mayra E. Alvarez, MHA, president of The Children’s Partnership, who shares her thoughts on how PCORI can make contributions to advance health equity. Videos of all sessions are now available free on demand (registration required).
Watch the video
Treatment for IVIG-Resistant Kawasaki Disease
Some 6,000 children in the United States are diagnosed each year with the rare condition Kawasaki disease (KD), which causes inflammation in the walls of blood vessels. About 10 percent to 20 percent of children with KD do not respond to the first-line therapy of a dose of intravenous immunoglobulin (IVIG). KIDCARE, a PCORI-funded national trial, found that the immunosuppressive drug infliximab was safe and more effective than a second dose of IVIG at resolving fever, decreasing length of hospital stay, and reducing the need for additional therapy in this subset of patients. The findings were published in The Lancet Child and Adolescent Health.
Learn more about the study
Comparing COPD Treatments
About 16 million US adults live with chronic obstructive pulmonary disease (COPD), and each year more than 150,000 Americans die from this disease. As we mark National COPD Awareness Month in November, PCORI highlights the portfolio of research we have funded relevant to people living with COPD, including 10 studies directly focused on this patient population.
One study, RELIANCE, is a large, pragmatic trial comparing long-term use of two drugs—the anti-inflammatory medicine roflumilast and the antibiotic azithromycin—among adults over 40 who were hospitalized for COPD exacerbation. The research team is assessing how well the drugs work in preventing serious COPD episodes as well as the benefits and harms of using the drugs long-term.
Learn more about the PCORI COPD portfolio
Board of Governors to Consider Award Slates, Research Agenda
PCORI’s Board of Governors will consider approval of two slates of research funding awards as well as topics for upcoming Targeted PCORI Funding Announcements when it meets on December 2. The Board also will consider approval of PCORI’s updated funding Commitment Plan for fiscal years 2022 through 2024 and the posting for public comment of PCORI’s proposed Research Agenda. In addition, the Board will hear PCORI’s end-of-year report.
The public is welcome to listen in via webinar or teleconference and register to offer comments during the public comment period.
Register for the meeting
PCORI is seeking to fill two associate director roles: Associate Director of Enterprise Data & Analytics Infrastructure and Associate Director, Digital Strategic Planning & Enablement. We invite you to learn more about these and other positions at PCORI.
Learn more about all positions and apply