Sepsis Alliance Launches National Sepsis Registry Initiative (NSRI)

A new initiative founded by Sepsis Alliance will advocate for the creation of a National Sepsis Registry—a hub of centralized information critical to improving sepsis care.

SAN DIEGO, CALIFORNIA—Sepsis Alliance, the nation’s first and leading sepsis organization, is excited to announce the National Sepsis Registry Initiative (NSRI), an independent, consensus-driven, multi-stakeholder advocacy initiative. A National Sepsis Registry of sepsis-relevant clinical and claims information will help researchers, patients, and caregivers improve sepsis diagnosis, treatment, and survivor care.

Sepsis, the body’s overwhelming and uncontrolled response to infection, remains both the leading cause of death in U.S. hospitals and the most expensive in-patient cost (270,000 lives lost to sepsis every year). Healthcare providers face enormous challenges in diagnosing and treating sepsis, which Sepsis Alliance clinical contributors have called “an epidemic hiding in plain sight.”

Clinicians face an additional obstacle in the lack of centralized, readily available information on sepsis. In a STAT op-ed, Sepsis Alliance clinical contributor Rommie Duckworth, Senior Medical Advisor Steven Simpson, and Board of Directors Chair Karin Molander argue that to manage a hidden epidemic, “The first step is to gather and analyze reliable and consistent data on who gets sepsis, what treatments work, and how best to support survivors and their families.”

In cancer, the Centers for Disease Control’s National Program of Cancer Registries contributed to impressive progress in outcomes, with over 1.7 million cancer cases registered annually. No such infrastructure has been created for reporting, tracking, or sharing sepsis-related information at the national level. Clinicians working to detect, diagnose, and treat sepsis need a platform for comprehensive, consistent reporting of sepsis data. Without the full picture that a national registry provides, clinicians are fighting what they can’t fully see. A National Sepsis Registry has the potential to play a key role in the fight for equity in sepsis care, illuminating disparities in patient diagnoses, treatments, and outcomes. It can also promote antimicrobial stewardship, equipping innovators with the data essential to developing new drugs, and physicians with state-of-the-art guidance on what works best for a given sepsis patient.

The NSRI is committed to addressing the critical lack of organized, sepsis-relevant data. A National Sepsis Registry, with privacy-protected, patient-specific, longitudinal, all-site-of-care data represents an essential next step to enable better diagnosis, outcomes, equity, innovation, and quality of care for patients with sepsis. To accomplish this, NSRI is promoting legislation to create the registry and engaging stakeholders in its implementation and use.

For further information about the NSRI, please visit SepsisRegistry.org, or contact Jon Glaudemans at jglaudemans@sepsisregistry.org.

Sepsis Alliance would like to thank Spectrum Science and the Society to Improve Diagnosis in Medicine for their support as Founding Partners.

About Sepsis Alliance

Sepsis Alliance is the first and leading sepsis organization in the U.S., working to save lives and reduce suffering by improving sepsis awareness and care. Sepsis.org, the organization’s website, serves the needs of more than 2.5 million visitors each year. In 2011, Sepsis Alliance designated September as Sepsis Awareness Month to bring healthcare professionals and community members together in the fight against sepsis. The organization’s Clinical Community and Sepsis Alliance Institute have provided training to more than 35,000 health providers across the country. Sepsis Alliance gives a voice to the millions of people who have been touched by sepsis – to the survivors, and the friends and family members of those who have survived or who have died. Since 2003, sepsis awareness in the U.S. has risen from 19% to 71%. Sepsis Alliance is a GuideStar Platinum Rated charity. For more information, please visit www.sepsis.org. Connect with us on Facebook and Twitter at @SepsisAlliance.