Considering the Indian context for potential pilot studies

Soon after the September meeting it was tried to find a date with some experts and key players from the Indian context to discuss the first draft for a study design, expected to be available in October. The event was meant to be a brainstorming meeting in a small group, but unfortunately Dr. Joshi (head of the GoI leprosy program), Dr. Pannikar (head of WHO’s global leprosy program) and Dr. Krishnamurthy (ILEP coordinator for India) had to withdraw their preliminary acceptance due to other commitments. So only Dr. Noordeen could attend the meeting which, however, turned out be very helpful to clarify the next steps.

The discussion at the meeting was rather broad and laid the foundation for considerations like: While possible under-detection and case detection delay would be the natural focus of such an initiative, it should not be restricted to just improving the statistics – identifying the number of hidden cases is important, but it is more important to find and treat them. The initiative might need to help develop valid measures and surrogate markers that are reliable and easy to use between different countries and over time, in order to define the paths and methods of improvement in health services. Special attention might need to be directed to distinguishing patient-related and health system-related parameters.

While it obviously makes sense to start with surveys in the country with the highest absolute numbers of leprosy cases, the new initiative would clearly aim on a global effort – a global research effort to fine-tune leprosy control, particularly with regard to earlier detection of new cases. Therefore collaboration and mutual exchange of interim findings with related survey projects of other players, such as the health authorities in the countries, would be highly desirable.

See also the minutes of the meeting and the KIT input regarding a potential study design.