The First Inherited Retinal Disease Registry in Iran: Research Protocol and Results of a Pilot Study.

BACKGROUND: To describe the protocol for developing a national inherited retinal disease (IRD) registry in Iran and present its initial report. METHODS: This community-based participatory research was approved by the Ministry of Health and Medical Education of Iran in 2016. To provide the minimum data set (MDS), several focus group meetings were held. The final MDS was handed over to an engineering team to develop a web-based software. In the pilot phase, the software was set up in two referral centers in Iran. Final IRD diagnosis was made based on clinical manifestations and genetic findings. Ultimately, patient registration was done based on all clinical and non-clinical manifestations. RESULTS: Initially, a total of 151 data elements were approved with Delphi technique. The registry software went live at www. IRDReg.org based on DHIS2 open source license agreement since February 2016. So far, a total of 1001 patients have been registered with a mean age of 32.41±15.60 years (range, 3 months to 74 years). The majority of the registered patients had retinitis pigmentosa (42%, 95% CI: 38.9% to 45%). Genetic testing was done for approximately 20% of the registered individuals. CONCLUSION: Our study shows successful web-based software design and data collection as a proof of concept for the first IRD registry in Iran. Multicenter integration of the IRD registry in medical centers throughout the country is well underway as planned. These data will assist researchers to rapidly access information about the distribution and genetic patterns of this disease.

Intravitreal Injection of Anti-vascular Endothelial Growth Factor Agents for Ocular Vascular Diseases: Clinical Practice Guideline.

PURPOSE: To provide the clinical recommendations for the administration of intravitreal anti-vascular endothelial growth factor (VEGF) drugs especially bavacizumab for ocular vascular diseases including diabetic macular edema, neovascular age-related macular degeneration, myopic choroidal neovascularization, retinal vein occlusion and central serous chorioretinopathy. METHODS: Twenty clinical questions were developed by the guideline technical committee. Relevant websites and databases were searched to find out the pertinent clinical practice guidelines to answer the questions. The technical committee provided possible answers (scenarios) according to the available evidences for each question. All scenarios along with their levels of evidence and the supported articles were sent to the experts for external review. If the experts did not agree on any of the scenarios for one particular clinical question, the technical committee reviewed all scenarios and their pertinent evidences and made the necessary decision. After that, the experts were asked to score them again. All confirmed scenarios were gathered as the final recommendations. RESULTS: All the experts agreed on at least one of the scenarios. The technical committee extracted the agreed scenario for each clinical question as the final recommendation. Finally, 56 recommendations were developed for the procedure of intravitreal anti-VEGF injection and their applications in the management of ocular vascular diseases. CONCLUSION: The implementation of this guideline can standardize the management of the common ocular vascular diseases by intravitreal injection of anti-VEGF agents. It can lead to better policy-making and evidence-based clinical decision by ophthalmologists and optimal evidence based eye care for patients.

Prevalence and causes of visual impairment and blindness in Sistan-va-Baluchestan Province, Iran: Zahedan Eye Study.

AIM: To determine the prevalence and causes of visual impairment and blindness in the Sistan-va-Baluchestan Province of Iran. METHODS: A population-based cross-sectional study with a multistage cluster sampling technique was used to identify the study subjects. Visual acuity (VA) was defined for all participants aged >or=10 years. Participants with a VA of <20/60 were examined by an ophthalmologist to determine the causes of low vision or blindness. RESULTS: 5446 (84.0%) of the invited people were examined. The prevalence of visual impairment (VA <20/60) was 6.81% (95% CI 5.91% to 7.71%) and of bilateral blindness (VA <3/60) was 0.79% (95% CI 0.50% to 1.08%). Visual impairment increased with age and illiteracy. Bilateral blindness doubled in women aged >40 years. The causes of visual impairment and blindness were cataract (37.7%), corneal opacity (15.0%), amblyopia (15.0%), glaucoma (5.7%) and hyperopia (5.0%). 39.5% of the visual impairment cases were potentially curable. CONCLUSION: The estimated magnitude of visual impairment and blindness was much higher than our expectations. Further investigation of the pattern of vision loss in women and children, particularly as a result of trachoma and amblyopia, is warranted. Implementation of measures to treat curable cases of the study population can improve the situation in the region dramatically.