Establishment of the National Registry for Inherited Retinal Dystrophy in Iran
试验速览
- 阶段
- 不适用
- 入组人数
- 1,000
- 试验地点
- 1
- 主要终点
- prevalence and incidence of the different types of inherited retinal dystrophy in different regions of Iran.
研究概览
简要总结
Purpose: To establish of the national Inherited Retinal Dystrophy Registry (IRDR) in Iran.
Methods: This study is a community-based participatory research that is approved by the Ministry of Health and Medical Education of Iran in 2016. To provide the minimum data set (MDS), several focus group meetings will be held with participation of the faculty members of the Ophthalmic Research Center affiliated to Shahid Beheshti University of Medical Sciences (SBMU). Final MDS will be presented to the software engineering team to develop a web-based software. In the pilot phase, software will be set up in two referral centers including Labbafinejad Medical Center (Tehran) and Alzahra Eye Hospital (Zahedan) to discover the possible drawbacks. Final diagnosis will be made based on both clinical manifestations as well as genetic findings.The steering committee meetings are planned to be held each year with the presence of delegates of all centers.
研究设计
- 研究类型
- Observational
- 观察模型
- Cohort
- 时间视角
- Prospective
入排标准
- 性别
- All
- 接受健康志愿者
- 是
入选标准
- •Patients with a definite diagnosis of IRD diagnoses based on clinical examinations and genetic testing.
排除标准
- •Individuals who have a suspected diagnosis of IRD disease
结局指标
主要结局
prevalence and incidence of the different types of inherited retinal dystrophy in different regions of Iran.
时间窗: 4 years
The present study is designed to determine the prevalence and incidence of IRD diagnoses in different regions of Iran based on the crude data which will be registered in the Iranian IRD registry.
次要结局
未报告次要终点
研究者
Zahra Rabbani Khah
Head of department
Shahid Beheshti University of Medical Sciences