Dataset Information

The data set development for the National Spinal Cord Injury Registry of Iran (NSCIR-IR): progress toward improving the quality of care.

ABSTRACT: STUDY DESIGN:Descriptive study. OBJECTIVES:The aim of this manuscript is to describe the development process of the data set for the National Spinal Cord Injury Registry of Iran (NSCIR-IR). SETTING:SCI community in Iran. METHODS:The NSCIR-IR data set was developed in 8 months, from March 2015 to October 2015. An expert panel of 14 members was formed. After a review of data sets of similar registries in developed countries, the selection and modification of the basic framework were performed over 16 meetings, based on the objectives and feasibility of the registry. RESULTS:The final version of the data set was composed of 376 data elements including sociodemographic, hospital admission, injury incidence, prehospital procedures, emergency department visit, medical history, vertebral injury, spinal cord injury details, interventions, complications, and discharge data. It also includes 163 components of the International Standards for the Neurologic Classification of Spinal Cord Injury (ISNCSCI) and 65 data elements related to quality of life, pressure ulcers, pain, and spasticity. CONCLUSION:The NSCIR-IR data set was developed in order to meet the quality improvement objectives of the registry. The process was centered around choosing the data elements assessing care provided to individuals in the acute and chronic phases of SCI in hospital settings. The International Spinal Cord Injury Data Set was selected as a basic framework, helped by comparison with data from other countries. Expert panel modifications facilitated the implementation of the registry process with the current clinical workflow in hospitals.

SUBMITTER: Azadmanjir Z

PROVIDER: S-EPMC7093542 | biostudies-literature | 2020 Mar

REPOSITORIES: biostudies-literature

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The data set development for the National Spinal Cord Injury Registry of Iran (NSCIR-IR): progress toward improving the quality of care.

Azadmanjir Zahra Z Jazayeri Seyed Behzad SB Habibi Arejan Roya R Ghodsi Zahra Z Sharif-Alhoseini Mahdi M Kheiri Ghazaleh G Zendehdel Kazem K Safdarian Mahdi M Sadeghian Farideh F Khazaeipour Zahra Z Naghdi Khatereh K Arab Kheradmand Jalil J Saadat Soheil S Pirnejad Habibollah H Fazel Mohammad Reza MR Fakharian Esmail E Mohammadzadeh Mahdi M Sadeghi-Naini Mohsen M Saberi Houshang H Derakhshan Pegah P Sabour Hadis H Benzel Edward C EC Oreilly Gerard G Noonan Vanessa V Vaccaro Alexander R AR Emami-Razavi Seyed Hassan SH Rahimi-Movaghar Vafa V

Spinal cord series and cases 20200324 1

<h4>Study design</h4>Descriptive study.<h4>Objectives</h4>The aim of this manuscript is to describe the development process of the data set for the National Spinal Cord Injury Registry of Iran (NSCIR-IR).<h4>Setting</h4>SCI community in Iran.<h4>Methods</h4>The NSCIR-IR data set was developed in 8 months, from March 2015 to October 2015. An expert panel of 14 members was formed. After a review of data sets of similar registries in developed countries, the selection and modification of the basic ...[more]

PMID: 32210224

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Project description:BACKGROUND: over the last 25 years several national registries of CF have been set up. Such systems can be very useful in providing an integrated resource for improving patient care and conducting research on the disease. Minimum Data Set is a common set of data items that should be used to collect and report data in the registry. The principal aim of this research was to determine minimum data set for the CF registry in north-west of Iran. METHODS: data items collected by several selected registries of cystic fibrosis were studied and an initial set of data was selected by the researchers. A group of experts including epidemiologists, pediatricians, and CF specialists were asked to review the proposed data elements and score them based on their importance by using a nine-point Likert scale. The items scored as important or highly important by more than 50 % of the experts, were included in final list of minimum data set. Availability of data was evaluated through reviewing medical records of 144 patients hospitalized in Children Hospital located in Tabriz. RESULTS: overall six classes of data (46 items) were identified in the selected registry systems for cystic fibrosis: patient demographics, administrative data, survival status, diagnostic procedures, genetic and clinical manifestations, and therapeutics. Thirty two data elements from all six categories of data were approved by the experts as the minimum data set for cystic fibrosis registry system. Availability of data in administrative category and survival class was 100 percent. Collecting data on medications was feasible in 100% of the cases as well. In class of demographic data, accessibility of patient name, age, gender, place of birth, and date of birth was 100 percent. In group of diagnostic procedures, partial availability of data was found for sweat test and genetic test. No data was found on the antenatal screening, exercise tolerance test, and glucose tolerance test. CONCLUSION: this work can be considered as a first step toward establishing CF registry system in Iran. Minimum data set can be also useful in designing electronic registry or electronic patient records for those suffering from CF toward integration of their fragmented records across continuum of the health care system in order to improve quality of shared patient care.

Project description:BackgroundSpinal cord injury (SCI) is one of the serious neurological diseases that occur in young people with high morbidity and disability. However, there is still a lack of effective treatments for it. Stem cell (SC) treatment of SCI has gradually become a new research hotspot over the past decades. This article is aimed at reviewing the research progress of SC therapy for SCI.MethodsReview the literature and summarize the effects, strategies, related mechanisms, safety, and clinical application of different SC types and new approaches in combination with SC in SCI treatment.ResultsA large number of studies have focused on SC therapy for SCI, most of which showed good effects. The common SC types for SCI treatment include mesenchymal stem cells (MSCs), hematopoietic stem cells (HSCs), neural stem cells (NSCs), induced pluripotent stem cells (iPSCs), and embryonic stem cells (ESCs). The modes of treatment include in vivo and in vitro induction. The pathways of transplantation consist of intravenous, transarterial, nasal, intraperitoneal, intrathecal, and intramedullary injections. Most of the SC treatments for SCI use a number of cells ranging from tens of thousands to millions. Early or late SC administration, application of immunosuppressant or not are still controversies. Potential mechanisms of SC therapy include tissue repair and replacement, neurotrophy, and regeneration and promotion of angiogenesis, antiapoptosis, and anti-inflammatory. Common safety issues include thrombosis and embolism, tumorigenicity and instability, infection, high fever, and even death. Recently, some new approaches, such as the pharmacological activation of endogenous SCs, biomaterials, 3D print, and optogenetics, have been also developed, which greatly improved the application of SC therapy for SCI.ConclusionMost studies support the effects of SC therapy on SCI, while a few studies do not. The cell types, mechanisms, and strategies of SC therapy for SCI are very different among studies. In addition, the safety cannot be ignored, and more clinical trials are required. The application of new technology will promote SC therapy of SCI.

Dataset Information

The data set development for the National Spinal Cord Injury Registry of Iran (NSCIR-IR): progress toward improving the quality of care.

Publications

The data set development for the National Spinal Cord Injury Registry of Iran (NSCIR-IR): progress toward improving the quality of care.

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