Trials / NCT04131400
Establishment of the National Registry for Inherited Retinal Dystrophy in Iran
Status unknown Observational Natural history / observational
- Sponsor
- Shahid Beheshti University of Medical Sciences
- Treatment
- Visual Acuity Testing and Retinal Imaging
- Gene
- Not stated
- Conditions
- Inherited Retinal Dystrophy Primarily Involving Sensory Retina, Inherited Retinal Dystrophy Primarily Involving Retinal Pigment Epithelium
- Ages
- Any to no upper limit
- Enrollment
- 1000 participants
- Started
- 2017-01-01
- Main results expected
- 2019-11-01
- Results posted
- Not yet
- Record last updated
- 2019-10-18
What the study is testing
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.
Where it runs
Iran (1)
- Ophthalmic Research Center, Tehran (recruiting now)