Registries for study of nonmalignant hematological diseases: the example of the Severe Chronic Neutropenia International Registry
- PMID: 31764167
- PMCID: PMC7236759
- DOI: 10.1097/MOH.0000000000000558
Registries for study of nonmalignant hematological diseases: the example of the Severe Chronic Neutropenia International Registry
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.
Conflict of interest statement
Conflicts of Interest
David Dale receives research support from and is a consultant for Amgen, the company which manufactures G-CSF
References
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**A very important comprehensive review of medical registries
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