Sickle-cell Disease Registry of the GPOH
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/
Inclusion Criteria:

 -  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 Criteria:

 - isolated heterozygous trait for HbS