Author/Authors :
AZADMANJIR, Zahra Department of Health Information Management - School of Allied Medical Sciences - Tehran University of Medical Sciences, Tehran , MOHTASHAM-AMIRI, Zahra Guilan University of Medical Sciences, Rasht , ZIABARI, Mahdi Guilan University of Medical Sciences, Rasht , KOCHAKINEJAD, Leila Guilan University of Medical Sciences, Rasht , HAIDARI, Hamid Guilan University of Medical Sciences, Rasht , MOHSENI, Mina Guilan University of Medical Sciences, Rasht , SABOUR, Hadis Tehran University of Medical Sciences, Tehran , KHAZAEIPOUR, Zahra Tehran University of Medical Sciences, Tehran , SHARIF-ALHOSEINI, Mahdi Tehran University of Medical Sciences, Tehran , GHODSI, Zahra Tehran University of Medical Sciences, Tehran , AMIRJAMSHIDI, Abbas Department of Neurosurgery - Sina Hospital - Tehran University of Medical Sciences, Tehran , AKBARZADEH, Farshad Guilan University of Medical Sciences, Rasht , ZENDEHDEL, Kazem Tehran University of Medical Sciences, Tehran , AZARHOMAYOUN, Amir Tehran University of Medical Sciences, Tehran , NAGHDI, Khatereh Tehran University of Medical Sciences, Tehran , OREILLY, Gerard Department of Epidemiology and Preventive Medicine - School of Public Health and Preventive Medicine - Monash University - Melbourne, Australia , MERETE, Ellen University College London - London, UK , VACCARO, Alexander R Department of Orthopaedic Surgery - The Rothman Institute - Thomas Jefferson University - Philadelphia, USA , BENZEL, Edward C Department of Neurosurgery - Cleveland - Ohio, USA , JAZAYERI, Behzad Department of Urology - University of Florida - Jacksonville, USA , RAHIMI-MOVAGHAR, Vafa Tehran University of Medical Sciences, Tehran
Abstract :
Background: The National Traumatic Spinal Cord Injury Registry in Iran (NSCIR-IR), was implemented initially in
three hospitals as a pilot phase from 11 Oct 2015 to 19 Jun 2016 and has been active in eight centers from 19 Jun 2016.
Poursina Hospital, a trauma care referral center in Rasht, Guilan Province of Iran is one of the registry sites, and has been
involved in registering eligible patients since 1 Jan 2016. This study aimed to identify the challenges and solutions for
sustaining the NSCIR-IR in a regional center.
Methods: This was a mixed-methods study. For the quantitative analysis, a retrospective observational design was used
to measure case capture or case identification rate, mapping cases in the registry against those eligible for registry inclusion
amongst the register of hospital admissions. For the qualitative component, data was collected using focus group discussions
and semi-structured interviews, followed by thematic analysis.
Results: From 19 Jun 2016 to 24 Jan 2018, the proportion of case capture (case identification rate) was 17%. The median
time between case identification and data entry to the system was 30.5 d (range: 2 to 193 d). Thematic analysis identified
a lack of trained human resources as the most important cause of low case identification rate and delay in data completion.
Conclusion: Recruitment and education to increase trained human resources are needed to improve case capture, the
timeliness of data input and registry sustainability in a regional participating site.
