Intraocular Tumors Registry System Protocol: The First Experience in Iran
Masood Naseripour1 , Ahad Sedaghat1 , Shadi Akbarian1 , Abbas Sheikhtaheri2 , Sayyed amirpooya Alemzadeh1 *, Reza Mirshahi1
- Eye Research Center, The Five Senses Institute Rassoul Akram Hospital , Iran University of Medical Sciences, Tehran, Iran
- Health Management and Economics Research Center, Department of Health Information Management, School of Health Management and Information Sciences, Iran University of Medical Sciences, Tehran, Iran
Abstract: To developed a registry system for patients with Retinoblastoma (RB) and Uveal Melanoma (UM) (two most common Intraocular tumor registry system), which are relatively rare diseases, in the Iranian population for the first time to reach comprehensive information about the etiology, pathogenesis, prevalence, annual incidence of these patients in Iran.
Methods: The protocol of this population-based participatory study was first evaluated by the Disease Registry Committee of Iran University of Medical Sciences (IUMS) and approved by the Disease Registry Committee of Iranian Ministry of Health and Education in 2017. Three primary phases seemed necessary to be implemented for our purpose: system development, provincial phase, national phase, and then international phase
Results: We conducted several expert panel discussion sessions to discuss and agree upon and also identify new data elements. We developed these data sets separately for RB and UM and classified these items as demographics, family history, past medical and ocular history, medications, previous surgeries, and treatments, as well as the current characteristics and status of tumor and treatment plans. The registry software is web-based (http://eyereg.iums.ac.ir) and accessed online.
For data quality assurance we will apply several procedures for data quality. Firstly, we developed some data validation rules in the software to prevent incomplete and erroneous data. , a dedicated employee will be assigned to quality control and detect possible errors and give feedback to participant ophthalmologists and oncologists to correct the possible errors.
Conclusion: By performing such a study, we expect to gain high-quality information on the natural history and histology of tumors as well as the long-term impacts of diverse methods of treatment. Attaining data on tumor characteristics including the stage of onset, survival, and recurrent rate substantially helps to reduce the morbidity and financial burden on patients, families, and societies.
