Implementing coronavirus disease 2019 scale-up registry protocol in national multiple sclerosis registry system of Iran

Background: The national multiple sclerosis (MS) registry is aimed at monitoring and improving quality of care and providing feedback to improve health outcomes by systematic recording of data. In 2018, the nationwide MS registry of Iran (NMSRI) was initiated for collecting epidemiological data and information on health care provision for patients with MS. The aim of the current study was to introduce the role of implementing coronavirus disease 2019 (COVID-19) scale-up registry protocol in NMSRI and arrange the national MS generality with information obtained during the COVID-19 pandemic. Methods: The NMSRI group set up a program with crucial elements to collect the data of patients with MS who developed COVID-19. All MS cases with confirmed diagnosis of COVID-19 were enrolled in this study. New elements were considered to be added into the dataset, including demographic characteristics, definite diagnosis of COVID-19 and its symptoms, history of comorbidities, history of medications and hospitalization, changes in magnetic resonance imaging (MRI), and infection outcomes. Results: The COVID-19 data collection program was designed in NMSRI to collect data of MS cases with COVID-19 infection. The data collection protocol was explained to neurologists through an online training workshop. To the date of the study, 21 centers from 17 provinces of Iran were involved in the COVID-19 databases promoting NMSRI and 612 participants were registered successfully. Conclusion: We extended an agreement on data collection and developed it in NMSRI with various contributors to discover a critical need for COVID-19 awareness and monitor clinical training in MS.

Natural history and epidemiology of cleft lip and palate: a registry-based study in Iran (2000-19)

The aim of this study was to provide the natural history and epidemiology of cleft lip and cleft palate in the northwest region of Iran between 2000 and 2019. Since 2000, infants born with birth defects have been registered in the Tabriz Registry of Congenital Anomalies (TRoCA). For this study, the information and data were collected using the TRoCA registry system. Prevalence of cleft lip and cleft palate was 1.48 (95% CI 1.34; 1.62) per 1000 live births over the past two decades in the region. The occurrence of cleft lip and cleft palate was more common in males than females. The fetal death ratio was 5 percent of live born children. The proportion of infants with cleft lip and cleft palate surviving to the second week was 54 percent. The results may have a role in planning and evaluating the strategies for primary prevention of cleft lip and cleft palate, particularly in high-risk populations.

Development, validation, and pilot implementation of the minimum datasheet for a domestic violence registry system: The case of a developing country

Background Domestic violence (DV) is a universal issue and an important public health priority. Establishing a DV Registry System (DVRS) can help to systematically integrate data from several sources and provide valid and reliable information on the scope and severity of harms. The main objective of this study was to develop, validate, and pilot-test a minimum datasheet for a DVRS to register DV victims in medical facilities. Materials and methods This study was conducted in two main phases. Phase one includes developing the datasheet for registration of DV in the DVRS. In phase two, the datasheet designed in the previous step was used in a pilot implementation of the DVRS for 12 months to find practical challenges. The preliminary datasheet was first developed using information on similar registry programs and guidelines of the World Health Organization (WHO) and then reviewed by four expert panels. Through a two-round Delphi technique, experts evaluated the instrument using the Content Validity Index (CVI) and Content Validity Ratio (CVR). The consistency of the responses was evaluated by test-retest analysis. Finally, two physicians in two forensic medical clinics registered the victims of physical and/or sexual violence perpetrated by a family member. Results Preliminary datasheet consisted of 31 items. In the first round of Delphi, fifteen items had good content validity (I-CVI and CVR) and were kept, and seven items were moved to the next round. Also, in the first round of Delphi, experts suggested adding three items, including history of the violence, custody of the child, and custody of the elderly. All items evaluated in the second round were kept due to good CVR and CVI scores. As a result of Test-retest correlation coefficients for self-reprted items, two items including perpetrator’s alcohol and drug use status were excluded (r(30) = +.43, and +.38, p< .01, two-tailed, respectively). Finally, 24 items were included in the datasheet including 15 items for individuals’ characteristics (victims’ characteristics and perpetrators’ characteristics), eight items for incidents’ characteristics, and one item for past history of violence experience. A total of 369 cases were registered from September 23, 2019, to July 21, 2020. The majority of the reported cases were female (82%) and were 19–40 years old. No physical and/or sexual violence was reported from rural areas, which calls upon researchers to explore how services for detecting and treating the victims can be made accessible to these areas. Conclusion DVRS can show trends in DV by age, sex, the context of the violence, and incidence characteristics at every point in time. This is particularly valuable in planning and prioritizing research areas and interventions for DV prevention. Additionally, DVRS can be linked to other disease registry programs which can contribute to continuity and coordination of care, and major research in the future. Although a DVRS can be a promising initiative in identifying the areas in need of urgent interventions, there is no guarantee for its proper implementation due to limited resources and other challenges.

The Development of a Nationwide, Multicenter Electronic Database for Spinal Instrumentation Surgery in Japan: Japanese Spinal Instrumentation Society Database (JSIS-DB)

(1) Background: Despite the number of complicated and expensive spine surgery procedures maintained by the national health insurance system in Japan, until now there has been no large-scale multicenter clinical database for this field to understand and improve healthcare expenditure and treatment outcomes. The purpose of this report is to announce the establishment and methodology of a nationwide registry system for spinal instrumentation surgeries by the Japanese Spinal Instrumentation Society (JSIS), and to report the progress over the first 1.5 years of this database’s operation. (2) Methods: The JSIS recently produced an online database with an electronic server. The collected information included patient background, surgery information, and early complications of primary and revision cases. Analysis included data from February 2018, when registration began, to August 2019. (3) Results: As of August 2019, 73 facilities have completed the required paperwork to start, and 55 facilities have registered cases. Of the total 5456 registered cases, 4852 were valid and 2511 were completed. (4) Conclusions: JSIS-DB, the nationwide web-based registry system for spinal instrumentation surgery in Japan, was launched for the purpose of research, healthcare policy regulation, and improved patient care, and its methodology and progress in the first 1.5 years are reported in this study.

Prevalence and time trend of congenital heart defects: a registry-based study in Iran

Introduction: Conclusion Congenital heart defects (CHD) are one of the most common types of congenital anomalies affecting one percent of births every year. The aim of this study was to report the prevalence and time trend of CHD in the northwest of Iran between 2000 and 2019. Methods: Since 2000, infants born with birth defects have been registered in Tabriz Registry of Congenital Anomalies (TRoCA). For this study, the information and data of newborns with CHD (1084) were collected using the TRoCA registry system. Results: Over two decades the prevalence rate of CHD in the northwest of Iran was 3.7 per 1000 live births (95 percent CI: 34.9 to 39.4). The prevalence rate of CHD during the first decade (2000-09) and the second (2010-19) were estimated 2.8 (95 percent CI: 2.5 to 2.9) and 5.9 (95 percent CI: 5.4 to 6.4) per 1000 live births, respectively. Conclusion: The prevalence rate of CHD in Iran showed an increasing trend indicating methodological improvement in the facilities and diagnosis techniques. It would therefore seem essential to concentrate on the primary prevention activities to reduce the burden of these defects. Keywords: Congenital heart defects, Prevalence, Congenital heart anomalies, Epidemiology

The Effect of COVID-19 on Referral Time and Cost of Outpatient'S Services Amongst Insured of Iran Health Insurance, Fars, 2020

Background This study aimed to investigate the effect of COVID-19 epidemic on the rate of referral and costs of outpatient services covered by Iran Health Insurance, Fars, Iran. Methods In this cross-sectional study, we used data registry system of Iran health insurance to compare cost of outpatient services and referral time after occurring COVID-19 epidemic with the same time before it. Extracted items included; outpatients’ and complementary services. Statistical analyses were performed with Graph Pad Prism software version 8.0, Wilcoxon and Mann-Whitney test. Results Costs paid for all outpatient and imaging services significantly decreased in 2020 compared to 2019. Also, the number of prescriptions in all outpatient services has significantly decreased, while the number of imaging diagnostic tests significantly increased. Conclusion Further studies are recommended to evaluate whether the reduction in cost of services and referral times are due to underutilization of services or not.

LSTM-Based Path Prediction for Effective Sensor Filtering in Sensor Registry System

The Internet of Things (IoT) is expected to provide intelligent services by receiving heterogeneous data from ambient sensors. A mobile device employs a sensor registry system (SRS) to present metadata from ambient sensors, then connects directly for meaningful data. The SRS should provide metadata for sensors that may be successfully connected. This process is location-based and is also known as sensor filtering. In reality, GPS sometimes shows the wrong position and thus leads to a failed connection. We propose a dual collaboration strategy that simultaneously collects GPS readings and predictions from historical trajectories to improve the probability of successful requests between mobile devices and ambient sensors. We also update the evaluation approach of sensor filtering in SRS by introducing a Monte Carlo-based simulation flow to measure the service provision rate. The empirical study shows that the LSTM-based path prediction can compensate for the loss of location abnormalities and is an effective sensor filtering model.

National Rare Diseases Registry System (NRDRS): China’s first nation-wide rare diseases demographic analyses

Background China has made tremendous progresses in serving the needs of its people living with rare diseases in the past decade, especially over the last 5 years. The Chinese government’s systematic approach included a series of coordinated initiatives, amongst these are: forming the Rare Disease Expert Committee (2016), funding the “Rare Diseases Cohort Study” (2016–2020), and publishing its first “Rare Disease Catalog” (2018). Herein, we present the National Rare Diseases Registry System (NRDRS)—China’s first national rare diseases registry, and the analysis of cases registered in the first 5 years ending Dec 31, 2020. Results The total 62,590 cases covered 166 disease/disease types, forming 183 disease cohorts. The data from nearly 22% of them (13,947 cases) is also linked to valuable biological samples. The average age of definitive diagnosis was 30.88 years; 36.07% of cases were under 18 years of age. Regional distribution analysis showed 60% of cases were from the more developed, wealthier East and North China, suggesting the local availability of quality care and patients’ financial status were key access factors. Finally, 82.04% of cases were registered from the five clinical departments: Neurology, Endocrine, Hematology, Cardiovascular, and Nephrology, suggesting that either these are most affected by rare diseases, or that there were disease non-specific ascertainment factors. Conclusions The preliminary analysis of the first 5-year’s data provides unique and valuable insight on rare disease distribution in China, and higlights the directions for enhancing equity, scale and utility.

Clinical Impacts of Juxtapapillary Duodenal Diverticulum Detected on Computed Tomography

Background: : Diverticula are commonly observed in the duodenum. Duodenal diverticulum (DD) usually does not give symptoms throughout life and is diagnosed by coincidence. However, it may present with different symptoms in patients. Objective:: This study aims to evaluate the prevalence of DD and juxtapapillary duodenal diverticulum (JDD) and its association with other possible pathologies and to determine its clinical impact by using Computed Tomography (CT). Methods: This retrospective observational study, which was taken consecutively between the years of 2013-2020, was evaluated in the Radiology Department. The total number of cases was 4850 (male-2440; female-2410). CT images were evaluated by two experienced radiologists at the workstation. DD and JDD prevalence and clinical findings in the hospital registry system were examined. Results: The age of the patients included in the study ranged from 17 to 92 years (mean age 46.94±16.42). In patients with DD (female-130; male-101), mean age was 62.24 ± 12.69 (21-92). The prevalence of DD was 4.76% (n=231). The prevalence of JDD was 4.02% (n=195) and increased with age (p<0.01). The average diameter of the JDD was measured as 23.29±8.22(9.5-55.3) mm. A significant positive correlation was found between age and DD diameter (p=0.039). DDs were found most commonly 84.42% (n=195) in the second segment of the duodenum as JDD. In patients with JDD, the mean diameter of choledochus and wirsung canal were 6.7 ± 2.4 (3-15.3) mm and 0.31 ± 0.1 (0.1-6.5) mm respectively. The choledochal diameter was correlated with the JDD size (p = 0.004). Cholelithiasis (n=56), choledocholithiasis (n=20), cholecystitis (n=52), diverticulitis (n=15), duodenitis (n=37), pancreatitis (n=5) and hiatal hernia (n=60) with JDD were observed. Periampullary carcinoma was detected in one patient.