Registries for study of nonmalignant hematological diseases: the example of the Severe Chronic Neutropenia International Registry. Issue 1 (January 2020)

• Record Type: Journal Article
• Authors: Dale, David C.; Bolyard, Audrey Anna; Steele, Laurie A.; Zeidler, Cornelia; Welte, Karl
• Is Part Of: Current opinion in hematology. Volume 27:Issue 1(2020)
• Publication Date: 2020-01
• Subjects: clinical outcomes research -- neutropenia -- registries -- severe chronic neutropenia; Hematology -- Periodicals; Blood -- Diseases -- Periodicals; 616.15
• DOI: 10.1097/MOH.0000000000000558
• Languages: English
• ISSNs: 1065-6251

Abstract

Abstract : Purpose of review: Registries provide 'real world' perspectives on the natural history and outcomes for many clinical conditions. The purpose of this review is to identify registries for nonmalignant hematological disease and to describe the operation of a successful long-term registry for patients with severe chronic neutropenia. Recent findings: There was an upswing in registries about 20 years ago, based on optimism about their utility to improve patient care. To show value, registries must define outcomes for populations of patients with specific medical conditions and the effects of treatment. This is challenging for many reasons. The Severe Chronic Neutropenia International Registry is an example of a successful registry. This report describes underlying reasons for its success. Summary: Registries are important to organize and analyze clinical information across geographic, ethnic and social boundaries. They are also challenging to organize, administer and support.