Special Report Extracorporeal Life Support Registry Report 2004 STEVEN A. CONRAD,* PETER T. RYCUS,† AND HEIDI DALTON‡ In this article, data from the annual international Extracorpo- real Life Support Organization (ELSO) Registry Reports through July 2004 are presented. Nearly 29,000 patients have received extracorporeal life support (ECLS). Of the patients, 66% (more than 19,000) were neonatal respiratory failure, with a 77% overall survival to discharge or transfer. The number of neonatal respiratory cases reported to the Registry has decreased from a peak of 1,500 patients in 1992 and has leveled off at approximately 800 cases per year. The number of pediatric respiratory cases has remained at approximately 200 cases per year since 1993, with a 56% survival to dis- charge or transfer. Adult respiratory failure continues to be the smallest age group treated with extracorporeal membrane oxygenation (ECMO), with less than 100 cases per year. Survival to discharge, however, is comparable with pediatric respiratory failure (53%). Support continues to increase for cardiac failure across all age groups, with survival to discharge rates of 38%, 43%, and 33% for neonatal, pediat- ric, and adults, respectively. Survival in pediatric and adult respiratory failure cases supported with ECLS has remained fairly consistent over the past 5 years. ASAIO Journal 2005; 51:4 –10. T he Extracorporeal Life Support Organization (ELSO) was formed in 1989, as a group of centers who were actively using extracorporeal life support (ECLS) in the management of car- diopulmonary failure. Among the functions of ELSO are en- hancing communication, developing guidelines for ECLS, and maintaining a registry of ECLS cases. This year, ELSO cele- brates its 15 th anniversary, with more than 100 participating domestic and international centers who actively report data to the registry. Maintaining a registry of ECLS cases is one of the major functions of ELSO. Originally, the ELSO Registry was imple- mented as four databases structured as flat files, corresponding to neonatal, pediatric, cardiac, and adult categories. Most fields were recorded as free text entries, making queries diffi- cult and inconsistent. With the growth of the Registry, the limitations of this format were recognized, and the database was reengineered as a single relational database with the use of coded entries from standardized classification systems such as International Classification of Diseases (ICD-9) and Current Procedural Terminology (CPT). The database, including data entry forms and reports, was first implemented in Microsoft Access (Microsoft Corporation, Redmond, WA). An electronic data entry mechanism was created to replace paper forms using Microsoft Word forms submitted by electronic mail that could be imported directly into the database. With continued growth, the database content was migrated to Microsoft SQL Server, and a web based data entry system was created. A cardiac addendum was implemented to supplement the stan- dard Case Report Form for cardiac support cases to capture case details not adequately handled by the existing coding systems. Methods The ECLS Registry is among the most important functions of ELSO. Data reported to ELSO include basic patient descriptive information, perinatal information (for neonates), preECLS physiologic data, ECLS equipment and implementation data, complications (mechanical and patient), and outcome infor- mation. To obtain more specific data on cardiac failure pa- tients, an addendum to track more specific information was created in 2001. All cases submitted to the Registry through June 2004 are included in this analysis. The Registry captures the vast major- ity of all ECLS cases performed in the United States because most active centers in the United States report their cases. It also captures cases from a number of international centers and thus represents a broad cross-section of ECLS cases. The Registry categorizes cases as neonatal, pediatric, and adult. Neonatal cases are those aged 30 days or younger at the time of initiation of ECLS. Pediatric cases include those over 30 days and younger than 18 years, and adults are those 18 years of age and above. Support categories are recorded as pulmonary, cardiac, or extracorporeal cardiopulmonary resuscitation (ECPR). Pulmo- nary cases are defined as those in which the primary indication for support is hypoxemic or hypercapnic acute respiratory failure, even if some degree of concomitant cardiac dysfunc- tion exists. Cardiac cases, likewise, include those where the primary reason for support is cardiac dysfunction. This cate- gory includes patients with primary cardiomyopathies, post- operative cardiac surgical cases (congenital and noncongeni- tal), and similar etiologies including bridge to transplant. Respiratory failure is frequently coexistent. ECPR captures sit- uations of rapid deployment support in cases of established or impending cardiopulmonary arrest. 1 Criteria for initiation of ECLS vary slightly from center to center but follow published From the *Louisiana State University Health Sciences Center, Shreveport, Louisiana; the †Extracorporeal Life Support Organization, Ann Arbor, Michigan; and the ‡Children’s National Medical Center, Washington, DC. Submitted for consideration October 2004; accepted for publication in revised form November 2004. Reprint Requests: Dr. Steven A. Conrad, LSU Health Sciences Center, 1501 Kings Highway, P.O. Box 33932, Shreveport, LA 71130-3932. DOI: 10.1097/01.MAT.0000151922.67540.E9 ASAIO Journal 2005 4