Establishment of the National Registry for Inherited Retinal Dystrophy in Iran

Status

UNKNOWN

Phases

Unknown

Study type

Observational

Source

ClinicalTrials.gov

Registry ID

NCT04131400

Enrollment

1000

Registered

2019-10-18

Start date

2017-01-01

Completion date

2021-06-01

Last updated

2019-10-18

For informational purposes only — not medical advice. Sourced from public registries and may not reflect the latest updates. Terms

Conditions

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

Brief 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.

Interventions

DIAGNOSTIC_TESTVisual 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

Study design

Observational model

COHORT

Time perspective

PROSPECTIVE

Eligibility

Sex/Gender

ALL

Healthy volunteers

Yes

Inclusion criteria

* Patients with a definite diagnosis of IRD diagnoses based on clinical examinations and genetic testing.

Exclusion criteria

* Individuals who have a suspected diagnosis of IRD disease

Design outcomes

Primary

Measure	Time frame	Description
prevalence and incidence of the different types of inherited retinal dystrophy in different regions of Iran.	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.

Countries

Iran

Outcome results

None listed

Source: ClinicalTrials.gov · Data processed: Feb 4, 2026