Assessment of Quality of Life in Hemophiliac Patients
试验速览
- 阶段
- 不适用
- 入组人数
- 100
- 试验地点
- 1
- 主要终点
- evaluation and improvement of quality of life of hemophiliac patients
研究概览
简要总结
Hemophilia is an X-linked congenital bleeding disorder caused by deficiency of coagulation factor VIII (in hemophilia A) or factor IX (in hemophilia B).
The deficiency is the result of mutations of the respective clotting factor genes.
详细描述
Hemophilia is rare, with only about 1 instance in every 10,000 births (or 1 in 5,000 male births) for hemophilia A and 1 in 50,000 births for hemophilia B.
According to the World Federation of Hemophilia, 400 000 people worldwide & 5,307 people in Egypt are suffering from hemophilia.
Hemophilia A is more common than hemophilia B, representing 80-85 % of the total hemophilia population.
Signs and symptoms of hemophilia vary according to the level of clotting factors, mild, moderate and sever.
- Unexplained excessive bleeding from cuts or injuries
- Epistaxis without a known cause
- Many large or deep bruises
- Hamoarthritis
- Hematuria and Melena.
- Intracranial hemorrhage and death
- In infants, unexplained irritability
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
- 10 Years 至 70 Years（Child, Adult, Older Adult）
- 性别
- Male
- 接受健康志愿者
- 否
入选标准
- •- Hemophilia A & B
- •Different age groups (pediatric - adolescence - adult )
- •Home or hospitalized treatment
- •complications such as joint swelling , spontaneous bleeding, etc....
排除标准
- •1- Other causes of bleeding tendency such as liver failure, DIC, anticoagulant drugs, etc..
- •2- Diseases that affect joints such as osteoarthritis, SLE , etc.. 3- Mentally retarded patients.
结局指标
主要结局
evaluation and improvement of quality of life of hemophiliac patients
时间窗: one year
by questionnaire
次要结局
未报告次要终点