Register Sichelzellkrankheit Der GPOH

About the 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/

Study point of contact

Laura Tagliaferri, Dr.
06221 56 4555
Laura.Tagliaferri@med.uni-heidelberg.de
Joachim Kunz, Dr.
06221 56 4555
Joachim.Kunz@med.uni-heidelberg.de

Locations

1 Germany site

Age

< 100 Years

Genotypes

HbSS, HbSC

Study type

Observational [Patient Registry]

Gender

All

Compensation

Unknown

participation requirements

– 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

participation restrictions

– isolated heterozygous trait for HbS

Locations

  • Heidelberg, BW, Germany, Center for Child and Adolescent Medicine, University Medical Center Heidelberg, 69124 [Recruiting]
Last updated 2021-01-07