Register Sichelzellkrankheit Der GPOH
试验速览
- 阶段
- 不适用
- 状态
- 招募中
- 入组人数
- 1,000
- 试验地点
- 1
- 主要终点
- Change in incidence of sickle-cell disease
研究概览
简要总结
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/
研究设计
- 研究类型
- Observational
- 观察模型
- Cohort
- 时间视角
- Prospective
入排标准
- 年龄范围
- 0 Years 至 100 Years（Child, Adult, Older Adult）
- 性别
- All
- 接受健康志愿者
- 否
入选标准
- •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
排除标准
- •isolated heterozygous trait for HbS
结局指标
主要结局
Change in incidence of sickle-cell disease
时间窗: Baseline and yearly, up to 10 years
The incidence of sickle-cell disease will be reported every year in comparison to the preceding Report.
次要结局
- Complications of sickle-cell disease(Baseline and yearly, up to 10 years)
- Treatment of sickle-cell disease(Baseline and yearly, up to 10 years)
研究者
Dr. Joachim Kunz
Senior physician
University Hospital Heidelberg