Sickle-cell Disease Registry of the GPOH
About this study
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/
- Condition
- Sickle Cell Disease
- Sponsor
- University Hospital Heidelberg
Who can join
- Age
- 0 to 100 years
- Sex
- All sexes
- Healthy volunteers
- Not accepted
Inclusion 10
- Minimum age: 0 years
- Maximum age: 100 years
- Study condition: Sickle Cell Disease
- signed informed consent
- current residency in either Germany, Austria or Switzerland
- sickle cell disease confirmed by hemoglobin analysis or molecular genetic analysis
- Homozygous sickle cell disease (HbSS)
- HbSC disease
- Sickle cell disease HbS / bThal
- Other, rare sickle cell syndromes such as HbS/OArab, HbS/HPFH, HbS/E, HbS/D Punjab, HbS/C Harlem, HbC/S Antilles, HbS/Quebec-CHORI, HbA/S Oman, HbA/Jamaica Plain
Exclusion 1
- \- isolated heterozygous trait for HbS
Where
1 site, 1 recruiting
Center for Child and Adolescent Medicine, University Medical Center Heidelberg
Heidelberg, Baden-Wurttemberg, Germany
Contact
-
Joachim Kunz, Dr.
06221 56 4555 Joachim.Kunz@med.uni-heidelberg.de
-
Laura Tagliaferri, Dr.
06221 56 4555 Laura.Tagliaferri@med.uni-heidelberg.de
Potential match only. Final eligibility is determined by the study team.