The mission of the National Hansen’s Disease Programs (NHDP) is to conduct research, educate patients and health care providers, and to provide direct medical services to Hansen’s Disease (HD [a.k.a. leprosy]) patients in the United States and its territories. In carrying out this mission, the program collects beneficiary information and maintains a National Hansen’s Disease Registry. The registry is a computerized database that provides operational information for administrative reports, and can be a useful epidemiological resource for certain clinical, rehabilitative and laboratory-based research.

HD Registry data are collected through the cooperative assistance of healthcare providers and a network of State and local health care agencies. Patient information is provided through delivery of the HD Surveillance Form, which serves as the instrument for processing new cases into the registry. When the NHDP becomes aware of a new HD case, a surveillance form is sent to the provider to obtain the data needed to register the patient. Additionally, this form can be downloaded from the NHDP Web site. Registry data also is reported by various State and local government agencies through the same surveillance form.

HD is a federally notifiable disease, and data reported to the National HD Registry is shared with the Centers for Disease Control and Prevention (CDC), and the World Health Organization (WHO). In addition, summary reports, customized reports addressing special data inquiries are provided to other governmental agencies and qualified academic researchers as needed. The National Hansen’s Disease Registry is a record of basic demographic information on U.S. HD cases presenting since 1894. The majority of all U.S. cases registered have presented since 1980 (median year). The total number of U.S. cases registered by the end of 2006 was 12,162. The following is a general demographic summary of the cases reporting in 2006.