The multicenter MYKKE registry helps researchers to answer pressing questions about this inflammatory heart muscle disease.

Understanding and Treating Myocarditis

There is hardly any other area of cardiovascular medicine in which diagnostic and therapeutic progress has been so slow as in the treatment of myocarditis. This inflammatory disease of the heart muscle is still poorly understood. Basic information on diagnostic criteria, treatment therapy and prognosis areis lacking, especially for the treatment of children and adolescents. Research in this area is urgently needed to standardize diagnostics, therapy and care and to better help young patients.

World's Largest Registry for Myocarditis Research

Since 2013, the nationwide MYKKE registry has been systematically recording the incidence, course, diagnosis and treatment of myocarditis in children and adolescents. To date, more than 350 patients have been enrolled. This makes MYKKE the largest myocarditis registry in the world.

Initial analyses show that younger children and adolescents are more frequently affected by the disease. In particular, children under the age of two are more likely to develop severe courses of the disease with acute heart failure and require intensive care, ventricular assist devices, or heart transplantation. Mortality is also significantly higher in this age group.

Improving Survival and Quality of Life

Since 2017, hospitals participating in the registry have followed a standardized diagnostic approach for children and adolescents with suspected myocarditis. The next step will be to establish refined diagnostic criteria for more effective treatment and improved prognosis. At the same time, MYKKE is working on a myocarditis score to facilitate diagnosis.

In addition, clinical studies are expected to contribute to the standardization of drug treatment and thus to improved therapeutic outcomes. The goal of the research in the MYKKE registry is to reduce mortality and improve prognosis and quality of life. To this end, immunology and genetics as well as their influence on myocarditis will be studied simultaneously.

Registry Services for Researchers

The National Registry for Congenital Heart Defects is responsible for collecting data and samples systematically and making them available for research. The Registry also advises participating researchers on study design and ensures the reliable selection of suitable data and samples.

MYKKE is supported by the German Society for Pediatric Cardiology and Congenital Heart Defects (DGPK), the Deutsches Herzzentrum der Charité (DHZC), the German Center for Cardiovascular Research (DZHK), the German Heart Foundation, the Fördergemeinschaft Deutsche Kinderherzzentren e. V. and the Competence Network for Congenital Heart Defects.

Complete Nationwide Coverage

The MYKKE registry is a multicenter project and is only successful because of the participation of numerous treating hospitals and departments. To date, 24 pediatric cardiology clinics are participating. The registry aims to enroll all patients with suspected myocarditis who are under 18 years of age at the time of diagnosis. All pediatric cardiology centers, all pediatric hospitals and all pediatric cardiologists in private practice in Germany can participate in MYKKE. An expansion to centers in Switzerland and Austria is in progress.

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