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Observational Study
. 2020 Jan;27(1):18-26.
doi: 10.1097/MOH.0000000000000558.

Registries for study of nonmalignant hematological diseases: the example of the Severe Chronic Neutropenia International Registry

David C Dale  1 , Audrey Anna Bolyard  2 , Laurie A Steele  1 , Cornelia Zeidler  3 , Karl Welte  4 ; Severe Chronic Neutropenia International Registry
Affiliations
Observational Study

Registries for study of nonmalignant hematological diseases: the example of the Severe Chronic Neutropenia International Registry

David C Dale et al. Curr Opin Hematol. 2020 Jan.

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.

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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

    1. Gliklich RE, Dreyer NA, eds. Registries for Evaluating Patient Outcomes: A User’s Guide. 2nd ed. Rockville, MD: Agency for Healthcare Research and Quality; 2019. September Available at: https://www.ncbi.nlm.nih.gov/books/NBK49444/ - PubMed

    2. **A very important comprehensive review of medical registries

    1. deGroot S, van der Linden N, Franken MG, et al. Balancing the optimal and the feasible: a practical guide for setting up patient registries for the collection of real-world data for health care decision making based on Dutch experiences. Value Health. 2017;20:627–636. - PubMed
    1. Glicklich R Patient Registries. Quintiles Outcome. 2012. Available at: https://www.pcori.org/assets/11-Gliklich-Slides-Registries.pdf
    1. National Institutes of Health. NIH Clinical Research Trials and You: List of Registries. Last reviewed Sept 3, 2019. Available at: https://www.nih.gov/health-information/nih-clinical-research-trials-you/...
    1. Gliklich RE, Castro M, Leavy MB, et al. Harmonized outcome measures for use in asthma patient registries and clinical practice. J Allergy Clin Immunol. 2019;144:671–681. - PubMed

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