Registries for study of nonmalignant hematological diseases
| Autor: | Cornelia Zeidler, Karl Welte, David C. Dale, Audrey Anna Bolyard, Laurie A Steele |
|---|---|
| Rok vydání: | 2020 |
| Předmět: |
Male
0301 basic medicine medicine.medical_specialty Neutropenia business.industry Extramural MEDLINE Hematology Disease Article Natural history 03 medical and health sciences 030104 developmental biology 0302 clinical medicine Hematological Diseases Humans Medicine Female Chronic neutropenia Registries business Intensive care medicine 030215 immunology |
| Zdroj: | Curr Opin Hematol |
| ISSN: | 1065-6251 |
| DOI: | 10.1097/moh.0000000000000558 |
| Popis: | PURPOSE OF THE 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 non-malignant 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 SCNIR 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. |
| Databáze: | OpenAIRE |
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