Sickle-cell Disease Registry of the GPOH

University Hospital Heidelberg1,000 enrolled

Overview

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 Type

OBSERVATIONAL

Enrollment

1,000

Conditions

Sickle Cell Disease

Eligibility

Sex: ALLMin age: 0 YearsMax age: 100 Years

Medical Language ↔ Plain English

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

Outcomes

Primary Outcomes

Change in incidence of sickle-cell disease

The incidence of sickle-cell disease will be reported every year in comparison to the preceding Report.

Time frame: Baseline and yearly, up to 10 years

Secondary Outcomes

Complications of sickle-cell disease

In addition to the incidence of the disease itself also possible complications will be reported in comparison to the preceding report (in case of the first report, only the prevalence will be reported as baseline).

Time frame: Baseline and yearly, up to 10 years

Treatment of sickle-cell disease

In addition to the incidence of the disease itself also the treatment received will be reported in comparison to the preceding report (in case of the first report, only the prevalence will be reported as baseline).

Time frame: Baseline and yearly, up to 10 years

Sickle-cell Disease Registry of the GPOH

Overview

Conditions

Eligibility

Locations (1)

Outcomes

Primary Outcomes

Secondary Outcomes

Central Contacts