Establishment of the National Registry for Inherited Retinal Dystrophy in Iran

Shahid Beheshti University of Medical Sciences

Status: Unknown

Conditions: Inherited Retinal Dystrophy Primarily Involving Sensory Retina; Inherited Retinal Dystrophy Primarily Involving Retinal Pigment Epithelium

Treatments: Diagnostic Test: Visual Acuity Testing and Retinal Imaging

Study type: Observational

Funder types: Other

Identifiers

NCT04131400

2222

Details and patient eligibility

About

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.

Enrollment: 1,000 estimated patients

Sex: All

Volunteers: Accepts Healthy Volunteers

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

Trial design

1,000 participants in 1 patient group

Patients with Inherited Retinal Dystrophy

Description:

known patients with a diagnosis of inherited retinal dystrophy (IRD) will be recruited to identify the type of IRD diagnosis. The comprehensive ophthalmic examinations and retinal imaging will be performed. Additionally, blood sample of all participants and their family members will be kept in our bio- bank for genetic testing.

Treatment:

Diagnostic Test: Visual Acuity Testing and Retinal Imaging