s of First National Congress of Medical Informatics, Mashhad, Iran, February 2017 © 2017 The Authors. This is an open access article under the terms of the Creative Commons Attribution-NonCommercialNoDerivs License, which permits use and distribution in any medium, provided the original work is properly cited, the use is non-commercial and no modifications or adaptations are made. Page 174 ESTABLISHMENT OF NATIONAL SPINAL CORD AND COLUMN INJURY REGISTRY OF IRAN (NSCIR-IR): A PROSPECTIVE QUALITY REGISTRY Zahra Azadmanjir1, Bizhan Aarabi2, Mohammad Reza Zarei3, Khatereh Naghdi3, Seyed Behzad Jazayeri3, Mahdi Safdarian3, Mahdi Sharif-Alhosseini3, Aidin Abedi3, Jalil Arab Kheradmand4, Kazem Zendehdel5, 6, Vafa RahimiMovaghar3* 1: Department of Health Information Management, School of Allied Medical Sciences, Tehran University of Medical Sciences, Tehran, Iran 2: Department of Neurosurgery, University of Maryland School of Medicine, Baltimore, Maryland, USA 3: Sina Trauma and Surgery Research Center, Tehran University of Medical Sciences, Tehran, Iran 4: Ahya Neuroscience Research Center, Tehran, Iran 5: Cancer Research Center, Cancer Institute of Iran, Tehran University Medical of Sciences, Tehran, I.R. Iran 6. Office of Disease and Health Outcome Registry, Deputy of Research and Technology, Ministry of Health and Medical Education, I.R Iran Correspondence: Vafa Rahimi-Movaghar, MD. Sina Trauma and Surgery Research Center, Tehran University of Medical Sciences, Tehran, Iran. Tel: +98216675002, Fax: +982166757009, E-mail: v_rahimi@yahoo.co TYPE OF ARTICLE: CONFERENCE ABSTRACT ABSTRACT Introduction: Spinal Cord Injury (SCI), a chronic and disabling condition, is often due to trauma. The annual incidence of SCI in the Iranian male and female population is an estimated 98.4 and 46.5 in 100,000, respectively. There is a lack of reliable data source on the care and outcomes of individuals with SCI. On the other hand, policy-makers need reliable data to prevent SCI and improve its patient care and long-term outcomes. The aim of this project was to establish a prospective, registry that will be feasible in practice and provide the required data on etiology, level and type of injury, and quality of provided care, in addition to patients’ outcomes and their quality of life. Methods: The project was started in November 2014 by presenting the initial plan of registry and creating the steering committee consisting of major stakeholders. After approval of the project by the Ministry of Health, a multi-disciplinary expert panel, including 45 national and international specialists, contributed in determining patient eligibility criteria; case finding, registration, follow-up processes and minimum data set (MDS). MDS, which was developed based on International Spinal Cord Injury Data Set, includes 350 data items. In order to include iatrogenic SCI, all patients who are admitted to the neurosurgery departments of collaborating hospitals with acute spinal fracture/dislocation with or without SCI, were defined as the eligible patients for registry. Data sources and data collection methods were paper medical records, medical images, hospital information system, interview with patients and attending physician, and observation of patient health status. A web-based application was designed for our registry processes. To ensure the feasibility of registry, a seven-month pilot study was conducted with participation of two hospitals in Tehran and one in Rasht. The coverage rate of eligible cases, workload amount and time spent for registration and quality review were considered to evaluate the performance of registry. Results: In the pilot phase, a total of 81 eligible patients were identified in three hospitals. Data of 16 patients from one hospital were not recorded into the electronic system. Thus, data of 65 patients were reviewed and verified. Data collection and quality control duration were 28±10 and 15 minutes per patient, respectively. Duration of the whole process from beginning of data entry until final verification was nearly two weeks. The cause of the problem was shortage of trained quality reviewers. The meanIntroduction: Spinal Cord Injury (SCI), a chronic and disabling condition, is often due to trauma. The annual incidence of SCI in the Iranian male and female population is an estimated 98.4 and 46.5 in 100,000, respectively. There is a lack of reliable data source on the care and outcomes of individuals with SCI. On the other hand, policy-makers need reliable data to prevent SCI and improve its patient care and long-term outcomes. The aim of this project was to establish a prospective, registry that will be feasible in practice and provide the required data on etiology, level and type of injury, and quality of provided care, in addition to patients’ outcomes and their quality of life. Methods: The project was started in November 2014 by presenting the initial plan of registry and creating the steering committee consisting of major stakeholders. After approval of the project by the Ministry of Health, a multi-disciplinary expert panel, including 45 national and international specialists, contributed in determining patient eligibility criteria; case finding, registration, follow-up processes and minimum data set (MDS). MDS, which was developed based on International Spinal Cord Injury Data Set, includes 350 data items. In order to include iatrogenic SCI, all patients who are admitted to the neurosurgery departments of collaborating hospitals with acute spinal fracture/dislocation with or without SCI, were defined as the eligible patients for registry. Data sources and data collection methods were paper medical records, medical images, hospital information system, interview with patients and attending physician, and observation of patient health status. A web-based application was designed for our registry processes. To ensure the feasibility of registry, a seven-month pilot study was conducted with participation of two hospitals in Tehran and one in Rasht. The coverage rate of eligible cases, workload amount and time spent for registration and quality review were considered to evaluate the performance of registry. Results: In the pilot phase, a total of 81 eligible patients were identified in three hospitals. Data of 16 patients from one hospital were not recorded into the electronic system. Thus, data of 65 patients were reviewed and verified. Data collection and quality control duration were 28±10 and 15 minutes per patient, respectively. Duration of the whole process from beginning of data entry until final verification was nearly two weeks. The cause of the problem was shortage of trained quality reviewers. The mean