Veterans health administration information systems as a resource for rare disorders research: Creutzfeldt-Jakob disease as a paradigm.
Mil Med
; 177(11): 1343-7, 2012 Nov.
Article
em En
| MEDLINE
| ID: mdl-23198511
ABSTRACT
OBJECTIVE:
To illustrate the application of Veterans Health Administration (VHA) information systems in both clinical and epidemiologic investigations of a rare disease, our specific aims were (1) to determine the number and incidence of Creutzfeldt-Jakob disease (CJD) diagnoses in the VHA from fiscal year (FY) 1997 through FY 2010 and (2) to describe the relevant clinical features associated with those diagnoses.METHODS:
The VHA Medical SAS Datasets were queried for all unique, incident CJD diagnoses between FY 1997 and 2010. Electronic health records were then reviewed to validate diagnoses using modified criteria.RESULTS:
During the study period, 115 CJD diagnoses (43 definite, 27 probable, 19 possible, and 26 suspected) were identified. Annual incidence ranged between 0.8 per million (95% CI, 0.3-1.7) in FY 2009 and 3.7 per million (95% CI, 2.1-6.4) in FY 1997. Dementia was documented in 111 cases (96.5%) and myoclonus in 73 (63.5%). Discharges consistent with CJD were noted in 31 of 78 patients (39.7%) with documented electroencephalography.CONCLUSIONS:
For certain rare diseases, VHA information systems can be used to assemble a substantive case series for clinical study. However, the VHA's distinctive demographic characteristics and population dynamics may limit the external validity of epidemiologic investigations.
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Coleções:
01-internacional
Base de dados:
MEDLINE
Assunto principal:
Veteranos
/
Síndrome de Creutzfeldt-Jakob
/
United States Department of Veterans Affairs
/
Doenças Raras
/
Saúde dos Veteranos
Tipo de estudo:
Incidence_studies
/
Observational_studies
/
Prognostic_studies
/
Risk_factors_studies
Limite:
Adult
/
Aged
/
Aged80
/
Female
/
Humans
/
Male
/
Middle aged
País/Região como assunto:
America do norte
Idioma:
En
Ano de publicação:
2012
Tipo de documento:
Article