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Clinical Trial Summary

Sickle cell disease is one of the most common hereditary diseases. Most severe complications can be avoided if the disease is detected early and treated appropriately. The sickle cell disease registry of the Society for Paediatric Oncology/Haematology aims at describing the epidemiology of sickle cell disease in German-speaking central Europe. Patients with sickle cell disease will be characterized clinically and genetically and treatment will be documented with the aim to find predictors of the course of disease. In addition, the registry results should provide a solid evidence base to incorporate sickle cell disease into routine newborn screening and to update the national guidelines for the management of patients suffering from sickle cell disease in Germany. A consortium of five university hospitals (Berlin, Frankfurt, Hamburg, Heidelberg, Ulm) has been mandated by the Society for Paediatric Oncology/Haematology to implement this registry. The number of participating centers is constantly increasing and new centers that take care of either pediatric or adult patients with sickle cell disease are encouraged to support the registry. For further information please refer to: http://www.sichelzellkrankheit.info/


Clinical Trial Description

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Study Design


Related Conditions & MeSH terms


NCT number NCT03327428
Study type Observational [Patient Registry]
Source University Hospital Heidelberg
Contact Joachim Kunz, Dr.
Phone 06221 56 4555
Email Joachim.Kunz@med.uni-heidelberg.de
Status Recruiting
Phase
Start date December 15, 2016
Completion date December 31, 2040

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