Sickle-cell Disease Registry of the GPOH

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/

NCT Number	NCT03327428
Lead Sponsor	University Hospital Heidelberg Collaborators: GPOH Consortium Sickle Cell Disease, Johann Wolfgang Goethe University Hospital, Universitätsklinikum Hamburg-Eppendorf, University Hospital Ulm, Charite University, Berlin, Germany, German Cancer Research Center, Deutsche Kinderkrebsstiftung, Pfizer
Conditions	Sickle Cell Disease
Enrollment	1,000 participants
Start Date	2016-12-15
Primary Completion	2026-12-31 (estimated)
Study Completion	2040-12-31 (estimated)
Updated on ClinicalTrials.gov	2025-01-24