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Accepted (AM)Open Access (License Unspecified), Open
Journal article
Registries for study of nonmalignant hematological diseases: the example of the Severe Chronic Neutropenia International Registry
Current opinion in hematology, v 27(1)
01 Jan 2020
PMID: 31764167
Featured in Collection : UN Sustainable Development Goals @ Drexel
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. Registries are important to organize and analyze clinical information across geographic, ethnic and social boundaries. They are also challenging to organize, administer and support.
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Details
- Title
- Registries for study of nonmalignant hematological diseases: the example of the Severe Chronic Neutropenia International Registry
- Creators
- David C. Dale - University of WashingtonAudrey Anna Bolyard - University of WashingtonLaurie A. Steele - University of WashingtonCornelia Zeidler - Medizinische Hochschule HannoverKarl Welte - Department of Hematology/Oncology, University Hospital Tübingen, Tübingen, GermanySevere Chronic Neutropenia Int Reg
- Publication Details
- Current opinion in hematology, v 27(1)
- Publisher
- Lippincott Williams & Wilkins
- Number of pages
- 9
- Grant note
- 5R 24AI049393 / National Institute of Allergy and Infectious Diseases (NIAID); United States Department of Health & Human Services; National Institutes of Health (NIH) - USA; NIH National Institute of Allergy & Infectious Diseases (NIAID) National Institutes of Health (NIH); United States Department of Health & Human Services; National Institutes of Health (NIH) - USA
- Resource Type
- Journal article
- Language
- English
- Academic Unit
- School of Biomedical Engineering, Science, and Health Systems; Drexel University
- Web of Science ID
- WOS:000563380000004
- Scopus ID
- 2-s2.0-85075963486
- Other Identifier
- 991019356343904721
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- Collaboration types
- Domestic collaboration
- International collaboration
- Web of Science research areas
- Hematology