Why It Matters

What is a patient registry?

A patient registry is a collection of data about a group of patients with a shared condition or experience. The Agency for Healthcare and Research Quality defines a registry as “an organized system that uses observational study methods to collect uniform data (clinical and other) to evaluate specified outcomes for a population defined by a particular disease, condition, or exposure, and that serves a predetermined scientific, clinical, or policy purpose(s).”

Why do we need a National Sepsis Registry?

  • To help scientists understand which tools and treatments lead to the best health outcomes, using reliable data to track the diagnosis and treatment of sepsis.
  • To inform who is at risk for sepsis and why.
  • To enable public health professionals detect and treat infection outbreaks, the precursor to sepsis.
  • To inform the appropriate use of antimicrobial agents, for more effective stewardship and more targeted treatment.
  • To identify disparities in access to care and services to focus equity initiatives.

Why now?

Sepsis remains the leading cause of death in hospitals. Patients with sepsis are often readmitted to hospital within 90 days and have an increased risk of mortality for up to two years after a sepsis diagnosis. Patients with sepsis face serious complications — organ dysfunction, amputation, post-traumatic stress — and survivors are often left with a compromised immune system. Many COVID survivors are also sepsis survivors, and treating sepsis often requires the use of advanced antimicrobials. For all these reasons, it’s critical to create the essential foundation for a data-driven approach to equitable sepsis prevention, diagnosis, treatment, and care.

Importantly, a number of organizations and agencies already collect, analyze, and/or report sepsis-related information, in varying formats. These efforts could yield faster progress in our fight against sepsis if they were harmonized and connected with one another.

We need better sepsis data; data that is better organized, better integrated, and more useful to patients, providers, and researchers.

To accomplish this will take time. The National Sepsis Registry Initiative looks forward to working with all sepsis stakeholders to chart a path forward to create a National Sepsis Registry, connecting clinical, claims, and patient-generated data, as well as health and social outcomes.

Get in Touch. Get Involved.

We are seeking interested experts and organizations to guide and support creation of a National Sepsis Registry. We have a variety of workgroups and Advisory Boards where we need your help.

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