KaRhab : an international online registry for cardiac rhabdomyomas

Background: Cardiac rhabdomyoma (RHM) is considered one of the most frequent benign heart tumors in children. However, encounters with cardiac RHM in clinical practice remain rare. Clinical information is primarily available in the form of single case reports or smaller studies with a shortage of large-scale reviews encompassing a substantial number of cases. Results: In order to congregate existing and future information on cardiac RHM we established a web-based cardiac RHM online registry using an online survey tool. In addition we integrated previously published data from individual case reports and case series. The evaluation of this paper is intended to provide a brief overview of the cohort that we have been able to include so far. Our findings mainly confirm the previous knowledge on cardiac RHM. At the same time, our cohort shows a clear heterogeneity in the treatment methods with regard to rhabdomyomas requiring therapy and revealed a bias between literature data and our registry data with regard to symptoms and need for therapy. Conclusion: In the view of the heterogeneity of treatment methods, a systematic overview of cardiac RHM is all the more important, especially as specific drug treatment options now exist. The registry should not just provide a comprehensive and informative overview of causes, time course, symptoms and therapeutic options of cardiac RHM but also facilitate information sharing among clinicians and researchers and serve as a basis for future clinical and pharmacological studies.