Data Sheet 1_Design and set-up of the leptospirosis registry LeptoScope for epidemiology, outbreaks and clinical studies on human leptospirosis.pdf

ObjectiveHuman leptospirosis is a widespread zoonosis with endemic appearance in different parts of the world. Despite causing more than 1 million cases, nearly 60.000 deaths and 3 million disability-adjusted life-years per year, leptospirosis remains an underrecognized and neglected disease calling for multinational surveillance and international collaboration.
MethodsThe leptospirosis registry LeptoScope is a novel project enabling both international and multi-disciplinary research on Leptospira-caused diseases. LeptoScope has an electronic case report form and can be assessed on the General Data Protection Regulation compliant platform clinicalsurveys.net. Due to its modular structure, LeptoScope depicts or hides items according to the documented case (e.g., patients treated in outpatient setting versus patient admitted to the intensive care unit). This ensures rapid, but standardized enrolment of patients even in epidemics.
ResultsInformation collected in LeptoScope include demographics, pre-existing diseases, clinical presentation and measures in addition to outcome. A multinational research team from Germany, Belgium and Spain contributed a pilot cohort of 78 cases with Leptospira-associated diseases to confirm LeptoScope’s functionality and practicality.
ConclusionLeptoScope is to our knowledge the first worldwide research platform on public health and clinical studies concerning Leptospira-associated diseases. LeptoScope promotes the needed collaboration at the cross-roads of public health, microbiology, infectious diseases and nephrology for an underrecognized and often neglected disease. Ensuring controlled or uncontrolled level II evidence LeptoScope may improve patient care and may provide evidence for robust treatment recommendations in future.