BACKGROUND: Lyme disease can affect multiple organ systems and range in clinical course from asymptomatic to fatal. Cases that qualify as confirmed or probable Lyme disease are reported to CDC through the National Notifiable Diseases Surveillance System (NNDSS). In the decades since Lyme disease became nationally notifiable, public health surveillance has provided the foundational knowledge of the geographic distribution and magnitude of the condition. Since 1991, Lyme disease has had an associated “extended record” that contains clinical and laboratory fields in addition to the core variables transmitted for all notifiable conditions. However, the content or format of those disease-specific fields has never been updated.
METHODS: We summarize data from the Lyme disease-specific extended record as received in CDC’s Lyme disease program during 2008-2015.
RESULTS: During 2008-2015, 208,834 confirmed and 66,755 probable cases of Lyme disease were reported to CDC. Approximately 60% of confirmed case records contained indication of ≥1 clinical feature implicit in confirmed case status such as EM rash, arthritis or facial palsy. Approximately 3% of probable case records also contained indication of a confirmatory clinical feature, which could indicate data transmission incompatibility. While transmitted successfully for some records, for others extended record fields contained mixtures of letters, numbers, or symbols; most are blank.
CONCLUSIONS: While public health practitioners devote extensive time and resources to capture detailed clinical, laboratory, and travel information as part of surveillance, the incomplete nature of these data as currently transmitted through traditional messages limits our ability to use these data for public health action. Despite informatics challenges, the sheer volume of Lyme disease cases captured by national surveillance provides unparalleled opportunity to: 1) better describe sub-populations at-risk of rarer, more severe, manifestations of Lyme disease; 2) summarize the broad clinical spectrum associated with probable cases; 3) assess secondary prevention; and 4) evaluate positive laboratory test patterns on a national scale, more important than ever, with additional testing algorithms on the horizon. A more creative and collaborative approach to summarizing characteristics of Lyme disease cases could maximize the utility of important data generated by public health practitioners across the country.