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

Hamideh SabbaghiNarsis DaftarianFatemeh SuriMehraban MirrahimiSina MadaniAbbas SheikhtaheriFarid KhorramiProshat SavizMohammad Zarei NejadAli TivayHossein Ali ShahriariAlireza MalekiSeyed Sajad AhmadiMonireh SargaziFrans P M CremersMaryam NajafiBarbara VonaThomas HaafPaulina Bahena-CarbajalAfrooz MoghadasiHoura NaraghiMehdi YaseriBahareh KheiriMasoumeh KalantarionElham SabbaghiMahtab SalamiLaleh PazookiKazem ZendedelShahnaz MojarrabHamid Ahmadieh

Published in: Archives of Iranian medicine (2020)

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.

Keyphrases

electronic health record
healthcare
big data
optical coherence tomography
clinical trial
cross sectional
health information
optic nerve
copy number