NHLBI ARDS Network

The Office of the Assistant Secretary for Preparedness and Response within the US Department of Health and Human Services and the US Centers for Disease Control and Prevention have partnered with the NHLBI and the ARDSNet to establish an adult registry of critically ill novel influenza.

Representatives from the US Food and Drug Administration and the National Institute of Allergy and Infectious Diseases are also involved with the registry. The goal of the registry is to obtain a better understanding of the burden of disease, severity of illness, clinical course, and resource utilization needed to optimize patient care for H1N1 associated critical illness. The ARDSNet dataset will collect data more than 50 ICUs from 42 hospitals in the Network. Pediatric Acute Lung Injury and Sepsis Investigator’s (PALISI) Network joined this novel partnership and are leading the registry efforts regarding the pediatric experience with H1N1 associated critical illness.

The ARDSNet and PALISI registry is being funded by the National Heart, Lung, and Blood Institute of the National Institutes of Health, will contain information on up to 2250 individuals admitted to the ICU with confirmed or suspected influenza, both novel H1N1 and seasonal influenza. Most patients will be collected prospectively; however, a subset of patients will be accrued retrospectively. Institutional Review Boards must approve the registry procedures for all sites.

The Office of the Assistant Secretary for Preparedness and Response and the ARDS Network Clinical Coordinating Center will rapidly analyze data for near-real time reporting to inform government response policy as well as timely reporting to front-line clinicians to impact clinical care.

Participation in this registry will be limited to ARDS Network and PALISI sites. North American investigators interested in participating in a registry should contact the InFACT Global initiative at http://www.infactglobal.org.