Register Sichelzellkrankheit Der GPOH
Overview
- Phase
- Not Applicable
- Intervention
- Not specified
- Conditions
- Sickle Cell Disease
- Sponsor
- University Hospital Heidelberg
- Enrollment
- 1000
- Locations
- 1
- Primary Endpoint
- Change in incidence of sickle-cell disease
- Status
- Recruiting
- Last Updated
- last year
Overview
Brief 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/
Investigators
Dr. Joachim Kunz
Senior physician
University Hospital Heidelberg
Eligibility Criteria
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
Time Frame: Baseline and yearly, up to 10 years
The incidence of sickle-cell disease will be reported every year in comparison to the preceding Report.
Secondary Outcomes
- Complications of sickle-cell disease(Baseline and yearly, up to 10 years)
- Treatment of sickle-cell disease(Baseline and yearly, up to 10 years)