Journal
JOURNAL OF ASTHMA
Volume 43, Issue 1, Pages 19-23Publisher
TAYLOR & FRANCIS LTD
DOI: 10.1080/00102200500446896
Keywords
Institutional Review Board; HIPAA; asthma; mortality; registry
Categories
Funding
- NIAID NIH HHS [AI-52338] Funding Source: Medline
- NIEHS NIH HHS [T32 ES07069] Funding Source: Medline
- NATIONAL INSTITUTE OF ALLERGY AND INFECTIOUS DISEASES [R21AI052338] Funding Source: NIH RePORTER
- NATIONAL INSTITUTE OF ENVIRONMENTAL HEALTH SCIENCES [T32ES007069] Funding Source: NIH RePORTER
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Purpose. Approximately 4,500 Americans die from asthma each year. Our objective was to determine the feasibility of creating a national fatal asthma registry to better understand this problem. Methods. Using a standard questionnaire, 18 state vital statistics departments and 22 medical examiners offices were contacted in 2001 to assess availability of fatal asthma data. Funding was obtained in 2002 to implement a fatal asthma registry. During 2003, the project was put on hold due to uncertainty about the impact of the Health Insurance Portability and Accountability Act (HIPAA). The project was revived in 2004 when a standard protocol was submitted to Institutional Review Boards (IRBs) in four different states. Results. All vital statistics departments reported that they were able to identify the decedent's name and demographic characteristics. Contact information for a relative or doctor was available in all states. Demographic characteristics and autopsy findings were available from 100% of the medical examiners offices. However, IRBs at the four institutions required major protocol modifications, including language and approach for contacting next of kin. Conclusion. Availability of demographic and clinical data across states is consistent. The creation of a national fatal asthma registry appears feasible, but different IRB interpretations of what is permissible preclude a standard approach across states.
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