The first inherited retinal disease registry in Iran: Research protocol and results of a pilot study

Sabbaghi, H. and Daftarian, N. and Suri, F. and Mirrahimi, M. and Madani, S. and Sheikhtaheri, A. and Khorrami, F. and Saviz, P. and Nejad, M.Z. and Tivay, A. and Shahriari, H.A. and Maleki, A. and Ahmadi, S.S. and Sargazi, M. and Cremers, F.P.M. and Najafi, M. and Vona, B. and Haaf, T. and Bahena-Carbajal, P. and Moghadasi, A. and Naraghi, H. and Yaseri, M. and Kheiri, B. and Kalantarion, M. and Sabbaghi, E. and Salami, M. and Pazooki, L. and Zendedel, K. and Mojarrab, S. and Ahmadieh, H. (2020) The first inherited retinal disease registry in Iran: Research protocol and results of a pilot study. Archives of Iranian Medicine, 23 (7). pp. 445-454.

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Abstract

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. © 2020 The Author(s). This is an open-access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons. org/licenses/by/4.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

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