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Sickle-cell Disease Registry of the GPOH

Recruitingn/aAges 0 Years - 100 YearsAllUniversity Hospital Heidelberg
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In plain words

What the trial is, and whether it could suit you

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

Sign in to get the eligibility rules as simple questions to take to your doctor.

๐Ÿ“‹ Eligibility rules (as published)
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
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What it tests

  • Not listed
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Where

1 site
Center for Child and Adolescent Medicine, University Medical Center Heidelberg
Heidelberg, Germany
๐Ÿค Taking part is your choice, and you can leave at any time. Only the trial team can confirm you are eligible โ€” always decide together with your own doctor.
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