NCT04131400

Establishment of the National Registry for Inherited Retinal Dystrophy in Iran

• Status: Unknown
• Phase: —
• Study type: Observational
• Enrollment: 1,000 (estimated)
• Sponsor: Shahid Beheshti University of Medical Sciences · Academic / Other
• Sex: All
• Age: —
• Healthy volunteers: Accepted

Summary

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.

Conditions

• Inherited Retinal Dystrophy Primarily Involving Sensory Retina
• Inherited Retinal Dystrophy Primarily Involving Retinal Pigment Epithelium

Interventions

Type	Name	Description
DIAGNOSTIC_TEST	Visual Acuity Testing and Retinal Imaging	All clinical and para- clinical tests including visual acuity assessment, perimetry, optical coherence tomography (OCT), enhanced depth- OCT, OCT angiography, color fundus, autofluorescence and infrared fundus photography will be performed

Timeline

• Start date: 2017-01-01
• Primary completion: 2019-11-01
• Completion: 2021-06-01
• First posted: 2019-10-18
• Last updated: 2019-10-18

Locations

1 site across 1 country: Iran