National Spinal Cord Injury Registry of Iran (NSCIR-IR) � a critical appraisal of its strengths and weaknesses

The National Spinal Cord Injury Registry of Iran (NSCIR-IR) is a not-for-profit, hospital-based, and prospective observational registry that appraises the quality of care, long-term outcomes and the personal and psychological burden of traumatic spinal cord injury in Iran. Benchmarking validity in every registry includes rigorous attention to data quality. Data quality assurance is essential for any registry to make sure that correct patients are being enrolled and that the data being collected are valid. We reviewed strengths and weaknesses of the NSCIR-IR while considering the methodological guidelines and recommendations for efficient and rational governance of patient registries. In summary, the steering committee, funded and maintained by the Ministry of Health and Medical Education of Iran, the international collaborations, continued staff training, suitable data quality, and the ethical approval are considered to be the strengths of the registry, while limited human and financial resources, poor interoperability with other health systems, and time-consuming processes are among its main weaknesses. © 2019 Chinese Medical Associatio

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

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

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

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

Validation of a translated version of the modified Japanese orthopaedic association score to assess outcomes in cervical spondylotic myelopathy: an approach to globalize outcomes assessment tools.

Contains fulltext : 87513.pdf (publisher's version ) (Closed access)BACKGROUND: Although the Japanese Orthopaedic Association (JOA) originally developed in Japan, the modified English version (mJOA) has become widely used and is arguably now the accepted standard. OBJECTIVE: In order to apply the mJOA successfully at an international level, we have translated it with a validated approach into Dutch to pave the way for other translated versions. METHODS: After a thorough forward and backward translation procedure, a final Dutch version of the mJOA was developed. This translated version was used to assess the interobserver reliability among 2 independent examiners by using a cohort of patients with neurological impairment due to spinal pathology. Results : The mJOA grading scale was used by 2 independent examiners in 25 patients with a variety of spinal diseases. Initially, the interobserver reliability expressed as kappa was 0.56 +/- 0.11. Then, instructions were given to the instructors to refrain from providing patients with an interpretation of the symptoms. Patients were asked to restrict themselves to the questionnaire and select the most appropriate score without bias from the examiner. Kappa increased to 0.78 +/- 0.05. This difference reached statistical significance (P < .001). CONCLUSION: We present a streamlined approach to translate the mJOA into a language other than English. The approach resulted in a Dutch version of the mJOA that had a high degree of interobserver reliability.1 mei 201

A biologic without guidelines: the YODA project and the future of bone morphogenetic protein-2 research

Scientific Assessment and Innovation in Neurosurgical Treatment Strategie