Designing a minimum data set for the information management system (registry) of spinal canal stenosis: An applied-descriptive study.

Background and Aims: Spinal canal stenosis is one of the most common vertebral column diseases, which can lead to disability. Developing a registry system can help in research on the prevention and effective treatment of it. This study designs a minimum data set (MDS) as the first step in creating a registry system for spinal canal stenosis. Method: The present research is of applied-descriptive type, performed in 2022. First, the applicable data elements about the disease were selected from a vast range of English and Farsi references, including peer reviewed articles, academic books, credible websites, and medical records of hospitalized patients. Through the extracted data, the primary MDS plan was designed as a questionnaire. The validity of the questionnaire was conducted via asking the opinion of experts (neurosurgeons, physiotherapists, epidemiologists, and health information management specialists). Also, its reliability was calculated via Cronbach ⍺ coefficient, which was 86%. Finally, the MDS of the spinal canal stenosis national registry system (for Iran) was confirmed through a two stage Delphi technique. Data analysis was applied through descriptive statistics via SPSS21 software. Results: The proposed MDS is offered in two general sets of data: administrative and clinical. For the administrative data set, 40 data elements had been proposed, as five classes. Twenty-six of them were confirmed. In the clinical section, 95 data elements had been proposed in 14 classes; 94 of which were finally confirmed. Conclusion: Since there is no spinal canal stenosis MDS available, this study can be a turning point in the standardization of the data on this disease. Moreover, these precise, coherent, and standard data elements can be contributed to improving disease management and enhancing the public healthcare quality. Also, the MDS proposed in this study can help researchers and experts, design a spinal canal stenosis registry system in other countries.

Development and evaluation of a customized checklist to assess the quality control of disease registry systems of Tehran, the capital of Iran in 2021.

BACKGROUND: Clinical registries facilitate medical research by providing 'real data'. In the past decade, an increasing number of disease registry systems (DRS) have been initiated in Iran. Here, we assessed the quality control (QC) of the data recorded in the DRS established by Shahid Beheshti University of Medical Sciences in Tehran, the capital city of Iran, in 2021. METHODS: The present study was conducted in two consecutive qualitative and quantitative phases and employed a mixed-method design. A checklist containing 23 questions was developed based on a consensus reached following several panel group discussions, whose face content and construct validities were confirmed. Cronbach's alpha was calculated to verify the tool's internal consistency. Overall, the QC of 49 DRS was assessed in six dimensions, including completeness, timeliness, accessibility, validity, comparability, and interpretability. The seventy percent of the mean score was considered a cut-point for desirable domains. RESULTS: The total content validity index (CVI) was obtained as 0.79, which is a reasonable level. Cronbach's alpha coefficients obtained showed acceptable internal consistency for all of the six QC domains. The data recorded in the registries included different aspects of diagnosis/treatment (81.6%) and treatment quality requirements outcomes (12.2%). According to the acceptable quality cut-point, out of 49 evaluated registries, 48(98%), 46(94%), 41(84%), and 38(77.5%), fulfilled desirable quality scores in terms of interpretability, accessibility, completeness, and comparability, however, 36(73.5%) and 32(65.3%) of registries obtained the quality requirement for timeliness and validity, respectively. CONCLUSION: The checklist developed here, containing customized questions to assess six QC domains of DRSs, provided a valid and reliable tool that could be considered as a proof-of-concept for future investigations. The clinical data available in the studied DRSs fulfilled desirable levels in terms of interpretability, accessibility, comparability, and completeness; however, timeliness and validity of these registries needed to be improved.

Severe trauma in Germany and Israel: are we speaking the same language? A trauma registry comparison.

Background: Trauma registries are a crucial component of trauma systems, as they could be utilized to perform a benchmarking of quality of care and enable research in a critical but important area of health care. The aim of this study is to compare the performance of two national trauma systems: Germany (TraumaRegister DGU®, TR-DGU) and Israel (Israeli National Trauma Registry, INTR). Methods: The present study was a retrospective analysis of data from the described above trauma registries in Israel and Germany. Adult patients from both registries treated during 2015-2019 with an Injury Severity Score (ISS) ≥ 16 points were included. Patient demographics, type, distribution, mechanism, and severity of injury, treatment delivered and length of stay (LOS) in the ICU and in the hospital were included in the analysis. Results: Data were available from 12,585 Israeli patients and 55,660 German patients. Age and sex distribution were comparable, and road traffic collisions were the most prevalent cause of injuries. The ISS of German patients was higher (ISS 24 vs. 20), more patients were treated on an intensive care unit (92 vs. 32%), and mortality was higher (19.4 vs. 9.5%) as well. Conclusion: Despite similar inclusion criteria (ISS ≥ 16), remarkable differences between the two national datasets were observed. Most probably, this was caused by different recruitment strategies of both registries, like trauma team activation and need for intensive care in TR-DGU. More detailed analyses are needed to uncover similarities and differences of both trauma systems.

The National Multiple Sclerosis Registry System of Iran (NMSRI): aspects and methodological dimensions.

INTRODUCTION: Multiple Sclerosis (MS) as one of the most common causes of disability around the world requires a uniform standardized information registry system to help policy-makers systematically plan for care quality improvements. The aim of this study is to verify aspects and methodological scopes of MS registry system in Iran. METHODS: The National MS Registry System in Iran (NMSRI) is a population-based registry system that systemically identifies and collects all MS patients' data in a specific geographical area. It supports 22 medical science universities and 13 MS societies in 18 provinces of Iran. The information items taken from each patient to collect the data set and data are gathered from all available sources including public and private hospitals, clinics, neurologists' offices, and all MS societies. They are recorded in District Health Information System 2 (DHIS2) software. DISCUSSION: The NMSRI is a successful system of collecting MS patients' data. It can lead to positive results, such as updating patients' data to receive new treatments, fair allocation of treatment budgets, and providing researchers with novel ideas to carry out research projects.

Evaluating the usability of a cancer registry system using Cognitive Walkthrough, and assessing user agreement with its problems.

OBJECTIVE/AIM: Good design of cancer registry systems makes them easy to use, while poor design of their user interfaces leads to user dissatisfaction and resistance. The objective of this study was to evaluate the usability of a cancer registry system using Cognitive Walkthrough (CW) and to assess users' agreement with its usability problems. METHODS: CW was used to evaluate the registry system. We developed a checklist to help evaluators speed up the evaluation process, a problems form to collect the usability issues identified by the evaluators, and a problems severity form to determine the severity of problems by the evaluators. The problems were classified into two categories according to the CW questions and the system tasks. The agreement of the users with the system problems was examined by an online questionnaire. Users' agreement with the problems was then analyzed using the Interclass Correlation Coefficient in the SPSS 22 (Statistical Package for Social Science). RESULTS: In this study, 114 problems were identified. In the categorization of problems based on the CW questions, 41% (n = 47) of the problems concerned the issue of "users do not know what to do at each stage of working with the system", 24% (n = 27) were classified as "users cannot link what they intend to do with system controls", and 22% (n = 25) were related to "user's lack of understanding of the system processes". Based on user tasks, about 36% (n = 41) of the problems were related to "removing patient duplication" and 33% (n = 38) were related to "registration of patient identification information". User agreement with the problems was high (CI 95% = 0.9 (0.96, 0.98)). CONCLUSION: System problems often originate from user ignorance about what to do at each stage of using the system. Also, half of the system problems concern a mismatch between what users want to do and the system controls, or a lack of understanding about what the system does at different stages. Therefore, to avoid user confusion, designers should use clues and guides on the screen for users, design controls consistent with the user model of thinking, and provide appropriate feedback after each user action to help users understand what the system is doing. The high agreement of users with the problems showed that in the absence of users system designers can use CW to identify the problems that users face in the real environment.

Usability of Iranian Primary Vitiligo Patient Registry (IPVPR): A Pilot Study.

BACKGROUND: Usability is essential for the acceptance and success of vitiligo patient registry system. Poor usability could decrease system efficiency and effectiveness, and have a negative impact on using the system and providing services. This study aims to evaluate the usability of vitiligo patient registry system. METHODS: This pilot study was conducted in 2021. In total, 17 users who were working in the vitiligo ward participated in the study. System usability scale (SUS) was used to evaluate the usability of vitiligo patient registry system. RESULTS: In the usability evaluation stage, the mean score of the system usability scale was obtained as 77.79. CONCLUSION: Developing vitiligo patient registry system with high usability and making decisions based on the registered data could provide better understanding of this disease and facilitate research in this field. Application of this system and its acceptance by users could decrease costs and increase effectiveness and quality of services.

Global assessment of characteristics of multiple sclerosis registries; A systematic review.

BACKGROUND: Developing a multiple sclerosis (MS) registry system in some countries has helped to recognize better and monitor the disease. This study was aimed to compare global characteristics of MS registries and promote and update the national MS registry in Iran (NMSRI). METHODS: This systematic review was conducted through searching Embase® Scopus, Medline®, Conference Proceeding Citation Index and Google Scholar. Two distinct researchers defined the research question and appropriate keywords. The extracted articles passed through two screening filters. The remaining articles were scanned full-text and included in this study. The bias assessment was conducted through in a score between 0 and 9 and articles with a score of five and above were included in the final analysis according to methodological development and reporting of review approach. RESULTS: We found 1498 articles after the primary search, of which 26 articles were included in this study after removing 55 duplicate articles, 1367 irrelevant articles, six non-English articles, and 44 non-eligible articles. Fourteen MS registries from 12 countries were compared to each other in the context of goal, data collection, funding, quality control, and governance. MS registries majorly follow the evaluation of epidemiologic and treatments characteristics of MS patients, and usually established by national organizations and MS associations. MS registries in European nations are developed earlier than NMSRI; although, it have promising properties in regard to goal, data collection, quality control, and governance in comparison to other MS registries. CONCLUSION: The MS registry systems developed from 1956 in European countries for improving quality of care of subjects. We found that the NMSRI has used previous experiences well and has achieved promising properties equal to European countries. Financial challenges should be addressed to improve this registry in the following years.

A Qualitative Study on the Establishment of an Interpersonal Violence Registry System in Iran.

Establishment of an interpersonal-violence registry system (IPVRS) is a promising initiative to tackle violence. This qualitative study aimed to fill the gap in knowledge regarding the feasibility of establishing the IPVRS in the East-Azerbaijan province of Iran. This qualitative study using content analysis was conducted to explore the importance, challenges, and facilitating factors of establishing the IPVRS from the viewpoints of stakeholders. Forty-six individuals from the Forensic Medical Organization, the University, the Welfare Organization, the Training and Education Organization, hospitals, and primary health centers participated in the study. Six themes and 13 sub-themes were identified. The importance of the establishment of the IPVRS was sub-categorized into two main themes, including violence as a public health priority and severe consequences of violence including intensive health and social outcomes and high use of medical services. The most critical challenges of establishing the IPVRS were categorized into two main themes including victims' under-reporting due to financial difficulties as well as psychosocial barriers and structural barriers such as organizational barriers and methodological challenges. Inter-sectoral partnership was identified as the main facilitating factor in the successful establishment of the IPVRS. The participants recommended improving the development of the IPVRS by stepwise development of the program, resource absorption from other beneficiary organizations, and making more coverage in the registry system. In conclusion, the establishment of the IPVRS is identified as an effective strategy to tackle violence-related issues. Close collaboration with different governmental and non-governmental sectors and the gradual development of the registry system can pave the way for establishing the IPVRS. This study has several implications for identifying potential challenges and facilitators of the IPVRS applicable to other developing countries with similar contexts.

Developing a minimum data set required to create a registry system for patients with vitiligo.

Background: Vitiligo can be psychologically devastating and stigmatizing, with significant impacts on patients. As such, the early treatment and understanding of the profound psychosocial impact of this skin disease cannot be overstated. A standardized method of data collection with consistent definitions is a prerequisite for vitiligo management. Against this background, this study aimed to develop a minimum data set (MDS) for the vitiligo registry system. Materials and methods: The study was conducted in four steps in 2020 in Iran. After a comprehensive literature review to find relevant resources in English, medical records of patients with vitiligo were examined to assess the status quo of the country. Then, a model was developed from the data obtained in the previous step and through interviews. To reach a consensus on the data items, the Delphi technique was applied using a questionnaire, and the mean of expert judgments on each data item was calculated. Results: A total of 127 data elements were developed through two rounds of the Delphi technique. The MDS was divided into an administrative part with three sections and 18 data items, and a clinical part with seven sections and 109 data items. Conclusion: This study is the first step towards establishing a registry system for patients with vitiligo. Accurate identification of data items, such as MDSs, can be useful in establishing a vitiligo registry, planning, and improving the quality of patient care.

Retrospective on Establishing Rare Diseases Medical Service System and Research Platform in China / 罕见病研究

Rare diseases refer to diseases characterized by very low prevalence rate but causing serious public health problem in the society. The diagnosis and treatment of the diseases pose great challenges.During the period of 13th Five-Year, China has accelerated the pace in all aspects targeting on policy support and scientific research in the rare diseases and on patients having the diseases. The efforts include establishing the cataglog for rare disease, introducing a series of policies to accelerate the R & D of drugs, upgrading the standardization of the diagnosis and treatment competences and so forth. In addtion, the establishment of National Rare Diseases Registry System(NRDRS) has been instrumental in knowing the burden of the diseases and enhancing the scientific research to rare diseases.

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.

A study to design minimum data set of COVID-19 registry system.

BACKGROUND: From the beginning of the COVID-19 pandemic, the development of infrastructures to record, collect and report COVID-19 data has become a fundamental necessity in the world. The disease registry system can help build an infrastructure to collect data systematically. The study aimed to design a minimum data set for the COVID-19 registry system. METHODS: A qualitative study to design an MDS for the COVID-19 registry system was performed in five phases at Ahvaz University of Medical Sciences in Khuzestan Province in southwestern Iran, 2020-2021. In the first phase, assessing the information requirements was performed for the COVID-19 registry system. Data elements were identified in the second phase. In the third phase, the MDS was selected, and in the four phases, the COVID-19 registry system was implemented as a pilot study to test the MDS. Finally, based on the experiences gained from the COVID-19 registry system implementation, the MDS were evaluated, and corrections were made. RESULTS: MDS of the COVID-19 registry system contains eight top groups including administrative (34 data elements), disease exposure (61 data elements), medical history and physical examination (138 data elements), findings of clinical diagnostic tests (101 data elements), disease progress and outcome of treatment (55 data elements), medical diagnosis and cause of death (12 data elements), follow-up (14 data elements), and COVID-19 vaccination (19 data elements) data, respectively. CONCLUSION: Creating a standard and comprehensive MDS can help to design any national data dictionary for COVID-19 and improve the quality of COVID-19 data.

A Cost-Effectiveness Evaluation of Hospitalizations, Fatalities, and Economic Outcomes Associated with Universal Versus Anaphylaxis Risk-Stratified COVID-19 Vaccination Strategies.

BACKGROUND: Vaccine-associated anaphylaxis is a rare event (1.34 events/million doses; 0.00017% occurrence over 26 years). Several reports of allergic reactions concerning for anaphylaxis have been reported early into the Pfizer-BioNTech and Moderna coronavirus disease 2019 (COVID-19) vaccine campaign in the United States, Canada, and the United Kingdom. OBJECTIVE: To perform a cost-effectiveness analysis characterizing the risks of COVID-19 versus vaccine anaphylaxis, comparing universal COVID-19 vaccination versus risk-stratified vaccination approaches. METHODS: Cohort analysis models were created to evaluate the cost-effectiveness of universal vaccination versus risk-stratified vaccination (eg, contraindicated in persons with a history of any previous episode of anaphylaxis) with a threshold for cost-effective care at $10,000,000 per death prevented. In the base case, risk of anaphylaxis was estimated at 0.1%, with case-fatality estimated at 0.3%. RESULTS: On a population level (n = 300,000,000 simulated persons), universal vaccination was associated with a cost-savings of $503,596,316 and saved 7,607 lives, but the cost-savings was sensitive to increasing rates of vaccine-associated anaphylaxis. The universal strategy dominated at higher rates of COVID-19 infection and low rates of vaccine-associated anaphylaxis in both the health care and societal perspectives. When the risk of vaccine-associated anaphylaxis exceeded 0.8%, the risk-stratified approach to vaccination was the most cost-effective strategy. There was also an interaction between anaphylaxis risk and anaphylaxis fatality, with a risk-stratified approach becoming cost-effective as each risk increased concurrently. Stratified observation time by anaphylaxis history (15 minutes vs 30 minutes) was not cost-effective until a 1% anaphylaxis case-fatality was assumed and risk of vaccine anaphylaxis exceeded 6%. CONCLUSIONS: This study demonstrates that unless vaccine anaphylaxis rates exceed 0.8%, a universal vaccination approach dominates a risk-stratified approach where persons with any history of anaphylaxis would be contraindicated from vaccination, with lower cost and superior health outcomes.

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.

Design and development of a web-based registry for Coronavirus (COVID-19) disease.

Background: The 2019 coronavirus (COVID-19) is a highly contagious disease associated with a high morbidity and mortality worldwide. The accumulation of data through a prospective clinical registry enables public health authorities to make informed decisions based on real evidence obtained from surveillance of COVID-19. This registry is also fundamental to providing robust infrastructure for future research surveys. The purpose of this study was to design a registry and its minimum data set (MDS), as a valid and reliable data source for reporting and benchmarking COVID-19. Methods: This cross sectional and descriptive study provides a template for the required MDS to be included in COVID-19 registry. This was done by an extensive literature review and 2 round Delphi survey to validate the content, which resulted in a web-based registry created by Visual Studio 2019 and a database designed by Structured Query Language (SQL). Results: The MDS of COVID-19 registry was categorized into the administrative part with 3 sections, including 30 data elements, and the clinical part with 4 sections, including 26 data elements. Furthermore, a web-based registry with modular and layered architecture was designed based on final data classes and elements. Conclusion: To the best of our knowledge, COVID-19 registry is the first designed instrument from information management perspectives in Iran and can become a homogenous and reliable infrastructure for collecting data on COVID-19. We hope this approach will facilitate epidemiological surveys and support policymakers to better plan for monitoring patients with COVID-19.

Improving hypertension surveillance from a data management prospective: Data requirements for implementation of population-based registry.

BACKGROUND: Hypertension (HTN) has become a major public health problem which can cause serious complications when it is not well-controlled. Prevention and effective care of HTN require a population-based registry. Thus, establishing this registry can be used to collect comprehensive, timely, and reliable data on epidemiology cases. The aim is to create a registry for the collection of highly required prospective data that will present an in-depth analysis of the characteristics of all individuals with HTN and track them over a particular chronological interval. MATERIALS AND METHODS: The study was divided into three phases: At first, a comprehensive literature review was conducted to determine the proposed data classes and data fields. Then, the final minimum data set was designed by a two-round Delphi consensus approach of 20 experts of cardiologists, nephrologists, nutritionist, and health information management. Finally, a web-based registry system was developed by a Structured Query Language environment. RESULTS: A total of two clinical and nonclinical data categories with nine data classes and 68 data fields were selected for their inclusion in the registry following the consensus phase. A web-based registry was designed with a modular and layered architecture. CONCLUSIONS: This study provides an appropriate information infrastructure for active tracing and monitoring of individuals with HTN. It has provided a practical information system allowing quality improvement, aggregate reporting for planning, and research purposes.

Sonographer quality management.

BACKGROUND: The echocardiogram is the second most used diagnostic tool for cardiovascular patient care. Qualified sonographers are needed to consistently produce high-quality echocardiograms to provide high-quality patient care. METHODS: Our department uses the three major management tools to assure sonographers are qualified. (1) ASE guidelines and standards. (2) Sonographer registry system and (3) quality improvement (QI) program with the accreditation of Echo Lab. QI measures are done quarterly assessing the appropriate use criteria for echocardiography, interpreter and sonographer variability, timeliness and completeness and correlations. The variabilities are assessed along ASE guidelines and standards. RESULTS: QI measures are mainly done by Medical Director and Technical Director. Medical Director and Technical Director discuss with individual interpreter and sonographer after QI measures are done each quarter as the feedback. Through the feedback improving the individual sonographer skills and understanding of Echo result. Our Echo Lab is accredited by Intersocietal Accreditation Commission (IAC). Accredited Echo Labs have to follow the IAC standards for echocardiography which includes those QI measures. Every sonographer in our lab is registered and complied for CME requirement to update their knowledge and skills. Twice a year QI meeting will be held and discuss about those QI measures and make consensus as Echo Lab. CONCLUSIONS: Registered sonographer with systematic quality checking system of their work will be achieved improving the high-quality echocardiogram and leading to the high-quality patient care.

Multiple sclerosis national registry system in Iran: Validity and reliability of a minimum data set.

BACKGROUND: As the prevalence and incidence of Multiple Sclerosis (MS) are increasing remarkably in Iran, gathering standardized information regarding the individual's diagnosis, care, and outcomes through a uniform registry system would enable policy-makers to systematically plan for care quality improvements. OBJECTIVE: To design a valid and reliable Persian version of a minimum data set to be utilized and integrated into the national MS registry system of Iran. METHOD: The minimum data set consisted of six domains including patient identification, family history of MS, diagnosis, disease course, disability status, and medications. The content validity was assessed based on 27 experts' opinions. Item-Content Validity Index (I-CVI) and Scale-Content Validity Index (S-CVI) were used to assess the questions and their validities. Reliability was evaluated using the intra-class correlation coefficient (ICC) of the test-retest results. RESULTS: For validity appraisal, 27 experts reviewed the developed minimum data set. All the items had I-CVI values higher than the critical value of 0.78 in terms of relevance, clarity, and simplicity, except for "medication start date" and "medication end date" in relevance (I-CVI = 0.75 and 0.73, respectively) and "MS type" in simplicity (I-CVI = 0.76). The total S-CVI scores for relevance, clarity, and simplicity were higher than 0.9. In reliability assessment, 27 patients (out of 74 interviewed patients) were re-interviewed to assess the test-retest reliability. All ICCs were higher than the critical value of 0.7 (in 14 items out of 16), except for "progression to secondary-progressive MS" with the ICC = 0.68 and "the reason for medication discontinuance" with the ICC = 0.64. CONCLUSION: The use of standardized validated minimum data set has the potential to enable the researchers and policy-makers to systematically compare and analyze patient information. The Persian version of the minimum data set found to be valid and reliable in Iran.

Current Status of Familial Hypercholesterolemia in China: A Need for Patient FH Registry Systems.

Background: Familial hypercholesterolemia (FH) greatly facilitates the development of cardiovascular disease (CVD). Without timely treatment, the incidence of coronary heart disease (CHD) in patients with FH is 3 to 4 times that in non-FH patients, and the onset of CVD would be advanced by approximately 10 years. There is ample evidence that the diagnosis and adequate treatment of FH are not properly considered for all ethnicities. The monogenic cause of FH includes apolipoprotein B (APOB), low-density lipoprotein receptor (LDLR), and proprotein convertase subtilisin/kexin 9 (PCSK9). There are approximately 2,765,420 to 6,913,550 cases of potential heterozygous FH (HeFH) and 2,205 to 4,609 cases of potential homozygous FH (HoFH) in China. Nevertheless, China lacks clinical diagnostic criteria specific to Chinese patients, such that most FH patients cannot be diagnosed until middle age or after their first cardiovascular event, thus precluding early treatment. Objective: This article explores the gene mutations, diagnosis and treatment of FH patients in China. Following the implementation of the two-child policy, there is a need to establish Chinese FH registry systems and genetic databases and to address the challenges in conducting cascade screening and long-term management. Conclusion: Advocating the establishment of FH registry systems and databases is an important rate-limiting step in improving long-term prognosis in FH patients, so that joint efforts of clinical experts and public communities are required. We recommend a process flow from case identification to entry into the registry system, and the widespread use of the system in clinical applications can provide the best treatment guidance for medical practice.

ART Registries-Characteristics and experiences: A comparative study.

BACKGROUND: The incident of infertility is continuously increasing. As a result, the demand for medical care such as assisted reproductive technology (ART) technology is equally increasing. In order to manage the growing data and information collected on ART, there is a need for a registry system can provide accurate statistics about activities and outcomes and ensure the quality control. Therefore, the aim of this study was to examine and compare In vitro fertilization (IVF) and ART registries. METHODS: This is a descriptive-comparative study in which data from the national ART registries of 14 selected countries in 2018 were collected. In this study, databases such as PubMed, Web of Sciences, and Scopus, as well as Google Scholar websites were searched. RESULTS: Important aspects of the registry were studied. One of the most important goals of these systems is to collect information about ART, as well as to monitor and report the results and implications, and also implement new care plans. CONCLUSION: A national registry helps to better understand the scope and the effect of assisted reproduction on the health of infertile couples. By this registry system, different countries can compare the data with other countries, allowing the improvement of techniques and the best possible care for patients.