Register Sichelzellkrankheit Der GPOH

Status: Recruiting
Location: See location...
Study Type: Observational
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/

Eligibility
Participation Requirements
Sex: All
Maximum Age: 100
Healthy Volunteers: f
View:

• 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

Locations
Other Locations
Germany
Center for Child and Adolescent Medicine, University Medical Center Heidelberg
RECRUITING
Heidelberg
Contact Information
Primary
Joachim Kunz, Dr.
Joachim.Kunz@med.uni-heidelberg.de
06221 56 4555
Backup
Laura Tagliaferri, Dr.
Laura.Tagliaferri@med.uni-heidelberg.de
06221 56 4555
Time Frame
Start Date: 2016-12-15
Estimated Completion Date: 2040-12-31
Participants
Target number of participants: 1000
Treatments
Patients with Sickle Cell Disease
Patients with any sickling condition, including among others Sickle Cell Anemia, HbSC Disease, HbS-betaThal, excluding Sickle Cell Trait.
Sponsors
Collaborators: Universitätsklinikum Hamburg-Eppendorf, Pfizer, German Cancer Research Center, University Hospital Ulm, Charite University, Berlin, Germany, GPOH Consortium Sickle Cell Disease, Deutsche Kinderkrebsstiftung, Johann Wolfgang Goethe University Hospital
Leads: University Hospital Heidelberg

This content was sourced from clinicaltrials.gov