Development of EpiInfo-based surveillance system for Hansen’s Disease

Project Name: Development of EpiInfo-based surveillance system for Hansen’s Disease

Project Status: Proposed

Point of Contact: David Blaney

Center: NCEZID

Keywords: Hansen’s Disease, leprosy, data, accessibility, availability, surveillance, management

Project Description: Please describe your project and the area of exploration. Potential project ideas can include, but are not limited to: extensions to existing tools, processes, and systems; evaluations and assessments; experiments or tests; prototypes; pilots; and development of minimum viable products to explore multi-staged projects.

In 2012—2013, BSPB contracted the development of a web-based surveillance system for Hansen’s disease (HD) in the U.S.-Affiliated Pacific Islands (USAPIs) where some of the highest infection rates in the world are documented. We now would like to develop an EpiInfo platform based on this piloted contractor product for use globally in other resource-limited countries. Unlike the previously developed proprietary system, an EpiInfo platform would not require annual subscription fees and would be available at no cost to end users. Furthermore, new additional data elements are necessary for our collaborative work, which would require additional contracting with the company that has developed the system in use. Finally, we have a need for a tablet- and pc-based, system that is locally housed and does not require internet access for use, which is a limitation to the current system. Collaborating partners in the development will include the Novartis Foundation and Netherlands Leprosy Relief.

Potential impact of project if successful: HD has no effective vaccines or prophylaxis regimes that are currently recommended. The primary World Health Organization (WHO) recommendations are for active surveillance, early diagnosis, and early treatment of patients. Patients no longer transmit the disease after one dose of effective treatment and thus the transmission cycle can be broken within that household. However, due to the long incubation period of HD, WHO recommends examining household members (who are the highest risk of developing HD due to exposure to the patient) annually for a minimum of 5 years to monitor for development of any lesions. An active surveillance system has the potential to reduce overall numbers of HD cases by stopping transmission earlier.

An additional advantage of earlier diagnosis and treatment is the prevention of disability associated with HD. HD can cause severe disabilities with the inherent lifelong-associated healthcare and loss of production costs. The emerging surveillance system would guide providers to conduct neurological examinations and initiate anti-inflammatory treatment as necessary. WHO recommends that these examinations continue after the completion of treatment due to immunological reactions, which can occur years afterwards. This surveillance system would allow for follow-up examinations for 5 years or more to help prevent disabilities associated with delayed reactions.

In addition, CDC is working with the Novartis Foundation and Netherlands Leprosy Relief on a Leprosy Post Exposure Prophylaxis (LPEP) project, and it is the desire of those organizations to utilize an EpiInfo-based data collection system. The surveillance system to be developed would also provide the data needs for this project, allowing for monitoring of post-exposure prophylaxis in contacts of HD patients, and would represent a new and innovative approach to HD control.

Thus, an EpiInfo active surveillance system has the potential to stop transmission, stop the development of disabilities, and reduce the number of HD cases, thereby decreasing the burden of disease. In addition, the availability of a free HD surveillance platform could improve the availability, quality, and timeliness of incoming data.

Scalability: Our existing HD surveillance system is an integrated module in developed to function in conjunction with tuberculosis and sexually-transmitted disease modules. A co-developed EpiInfo platform could potentially support all 3 disease modules as well as others that may be developed in the future.

Methodology: Collaborate with EpiInfo software engineers to develop a tablet-based, and later a web-based, surveillance platform for HD. We would pilot the module in the USAPIs and in the LPEP project as well as introduce the platform at the International Leprosy Congress for global use.
Measure of success: Initial increase in documented HD cases followed by annual reductions in new cases. If used effectively, the data would truly represent the burden of HD in the affected areas and assist with scarce public health resource management to include financial and workforce planning. The availability of a free HD surveillance platform could improve the availability, quality, and timeliness of incoming data.

For more information about this project, please contact the CHIIC at chiic@cdc.gov or Brian Lee at brian.lee@cdc.hhs.gov.