Implementation of thyroid eye disease registry in Iran: rationale and research protocol.

BACKGROUND: To describe the implementation of a registry system for patients with thyroid eye disease (TED) in Iran to obtain more information about its nature, prevalence, and annual incidence, as well as extend insight into the etiology, pathogenesis, and eventually make an accurate prognosis of different medical or surgical treatment methods. METHODS: After receiving approval from the Disease Registry Committee of Iran University of Medical Sciences (IUMS) in 2019 and the Ministry of Health and Medical Education (MOHME) in 2020, the protocol was introduced in three consecutive phases at regional, provincial and national levels. The establishment of a registry committee in Rassoul Akram Hospital, one of the medical centers affiliated to IUMS, was the first step to organizing the registry project's main core. The steering committee included six subgroups of required subject fields. The members are experts in developing a guideline, providing a new dataset, drawing an outline for the next steps, and structuring user-friendly software through several panel discussion meetings. The data is collected from clinical and para-clinical/imaging findings, laboratory evaluations, and their selected treatment strategy, retrospectively and prospectively. RESULTS: The purpose is to broaden our knowledge about the profile of TED; accordingly, data related to patients' demographics, thyroid gland disease (status, duration, treatments, and function tests), general medical and ocular history, along with visual/ocular exams resulting TED status are collected and recorded in a 2- language software. The web-based software system is accessible at https://orc.iums.ac.ir . To maintain data security, prioritized user access was defined for different members. Furthermore, diverse methods, such as employing trained staff and utilizing software validation rules, were implemented to control data quality in every step of data collection, entry, and registration. Medical records of retrospective subjects were also evaluated and entered after accuracy verification. CONCLUSION: Iran's TED registry provides practitioners with comprehensive data on natural history and phenotype variations in clinical features and outcomes. It facilitates patient recruitment and, consequently, earlier diagnosis on a large scale which helps improve treatment and quality of life for patients.

A health terminological system for inherited retinal diseases: Content coverage evaluation and a proposed classification.

PURPOSE: To present a classification of inherited retinal diseases (IRDs) and evaluate its content coverage in comparison with common standard terminology systems. METHODS: In this comparative cross-sectional study, a panel of subject matter experts annotated a list of IRDs based on a comprehensive review of the literature. Then, they leveraged clinical terminologies from various reference sets including Unified Medical Language System (UMLS), Online Mendelian Inheritance in Man (OMIM), International Classification of Diseases (ICD-11), Systematized Nomenclature of Medicine (SNOMED-CT) and Orphanet Rare Disease Ontology (ORDO). RESULTS: Initially, we generated a hierarchical classification of 62 IRD diagnosis concepts in six categories. Subsequently, the classification was extended to 164 IRD diagnoses after adding concepts from various standard terminologies. Finally, 158 concepts were selected to be classified into six categories and genetic subtypes of 412 cases were added to the related concepts. UMLS has the greatest content coverage of 90.51% followed respectively by SNOMED-CT (83.54%), ORDO (81.01%), OMIM (60.76%), and ICD-11 (60.13%). There were 53 IRD concepts (33.54%) that were covered by all five investigated systems. However, 2.53% of the IRD concepts in our classification were not covered by any of the standard terminologies. CONCLUSIONS: This comprehensive classification system was established to organize IRD diseases based on phenotypic and genotypic specifications. It could potentially be used for IRD clinical documentation purposes and could also be considered a preliminary step forward to developing a more robust standard ontology for IRDs or updating available standard terminologies. In comparison, the greatest content coverage of our proposed classification was related to the UMLS Metathesaurus.

Gastrointestinal implications in COVID-19.

BACKGROUND: Coronavirus disease 2019 (COVID-19 patients mostly present with respiratory symptoms; however, gastrointestinal (GI) manifestations can also be seen either alone or along with respiratory symptoms. We aimed to evaluate the GI symptoms related to COVID-19. METHODS: This cross-sectional study retrospectively evaluated the medical files of 507 patients with confirmed or highly probable COVID-19. Based on their symptoms, patients were categorized into four groups: with GI symptoms alone (GIA), with respiratory symptoms alone (RA), with both GI and respiratory symptoms (GIR), and without GI or respiratory symptoms (WGIR). RESULTS: Of the 507 COVID-19 patients, 47.9% had at least one GI symptom; the most common was nausea and/or vomiting (31.6%). Patients in the GIA group were significantly older than those in the RA (P = 0.041) and GRI (P = 0.004) groups (54.70 ± 18.14 vs. 48.68 ± 14.67 and 46.80 ± 17.17 years, respectively). Groups were homogeneous with respect to gender. Leukopenia and lymphopenia were both less frequent in patients with GI symptoms compared to those without GI symptoms. Positive RT-PCR was significantly less frequent among patients with GI symptoms (44% vs. 100%, P < 0.001). Although mortality was lower in patients with GI symptoms (9.1%) in comparison with those without GI symptoms (13.3%), the difference was not statistically significant (P = 0.134). CONCLUSION: The typical respiratory symptoms of COVID-19 are quite commonly accompanied by GI symptoms, with nausea and/or vomiting being the most prevalent. A subgroup of COVID-19 patients may exclusively present with GI symptoms. Special attention should be paid to these patients in order to avoid misdiagnosis or delayed treatment.

Clinical and Epidemiological Characteristics of Hospitalized COVID-19 Patients in Hormozgan, Iran: A Retrospective, Multicenter Study.

BACKGROUND: To better manage the COVID-19 pandemic, it is necessary to carefully study information about patients with COVID-19. Objective: To report clinical and epidemiological characteristics of COVID-19 patients in southern Iran. METHODS: This cross-sectional retrospective study was conducted based on data extracted from the COVID-19 registry of Hormozgan. Data from patients with confirmed COVID-19 based on CT-scan results or real-time reverse transcriptase-polymerase chain reaction (RT-PCR) results until September 25, 2020, were analyzed for this study (2351 inpatients). We reported demographics, signs and symptoms on admission, comorbidities, and treatments, as well as clinical outcomes, hospital stay, and intensive care unit (ICU) admission. RESULTS: Most of patients were men (1235/2351; 52.5%) and the most common signs and symptoms included cough (1343/2351; 57.1%), shortness of breath (1224/2351; 52.1%) and fever. The most common comorbidities included hypertension (410/2351 (17.4%), diabetes (343/2351; 14.6%) and chronic cardiac disease (282/2351; 12%). Also, 228 patients (9.7%) were hospitalized in the ICU. The mortality rate was 12.5% (295/2351) among all patients and 64.5% (147/228) in ICU wards, respectively. The number of cases with comorbidities including hypertension, chronic cardiac disease, diabetes, chronic neurological disorders, chronic kidney disease, chronic hematologic disease, malignant neoplasm, moderate or severe liver disease, dementia and fauvism in the ICU was significantly higher than the general wards. CONCLUSION: Most characteristics of our patients were similar to those reported in other studies; however, our patients were younger and suffered from a less severe disease. The mortality rate in the ICU was higher than other studies.

Implementation of regional COVID-19 registry in Hormozgan (RCovidRH), Iran: Rationale and study protocol.

Background: The rapid outbreak of COVID-19 has resulted in a global pandemic in 2020. Information sources such as disease registries through accessing quality, valid, accurate, and timely data empower researchers and health authorities to study and develop appropriate actions. Our study describes the protocol for implementation of regional COVID-19 registry in Hormozgan province (RCovidRH). Methods: We followed approved phases for the development of RCovidRH to cover the population in Hormozgan. Missioned to develop and implement the protocol, the registry's steering committee was made up of 10 members from subject fields of the registry at the core and 5 subgroups. The main purpose of the registry is to provide a comprehensive information profile of demographic, clinical, laboratory, imaging, and treatment data of confirmed and probable COVID-19 patients in Hormozgan. The data is retrospectively and prospectively collected. Case report form (CRF) was mainly based on International Severe Acute Respiratory and Emerging Infection Consortium (ISARIC) CRF. A web-based, 2-language software was also developed to facilitate data collection and storage. Data analysis is to be conducted with collaboration of clinical physicians, data-mining specialists, and epidemiologists after reaching appropriate sample size. Results: We included data related to demographic and identification, onset and admission, signs and symptoms at hospital admission, admission signs and symptoms, comorbidities, pathogen testing, assessment, laboratory, imaging, complications, treatment and medication, and outcomes. We found this registry was limited by incomplete clinical data for small fraction of outpatients, incomplete or inaccurate address by referred people due to fear of social rejection, delay in data entry at the facilities due to workload. Conclusion: This registry via organizing clinical and epidemiological COVID-19 data increases the potentiality of joint studies. Recognition and coordination of a registry is highly important to solve its limitations to collect data. Other universities and provinces can apply our model to develop COVID-19 registries or data sets for this disease.

The First Inherited Retinal Disease Registry in Iran: Research Protocol and Results of a Pilot Study.

BACKGROUND: To describe the protocol for developing a national inherited retinal disease (IRD) registry in Iran and present its initial report. METHODS: This community-based participatory research was approved by the Ministry of Health and Medical Education of Iran in 2016. To provide the minimum data set (MDS), several focus group meetings were held. The final MDS was handed over to an engineering team to develop a web-based software. In the pilot phase, the software was set up in two referral centers in Iran. Final IRD diagnosis was made based on clinical manifestations and genetic findings. Ultimately, patient registration was done based on all clinical and non-clinical manifestations. RESULTS: Initially, a total of 151 data elements were approved with Delphi technique. The registry software went live at www. IRDReg.org based on DHIS2 open source license agreement since February 2016. So far, a total of 1001 patients have been registered with a mean age of 32.41±15.60 years (range, 3 months to 74 years). The majority of the registered patients had retinitis pigmentosa (42%, 95% CI: 38.9% to 45%). Genetic testing was done for approximately 20% of the registered individuals. CONCLUSION: Our study shows successful web-based software design and data collection as a proof of concept for the first IRD registry in Iran. Multicenter integration of the IRD registry in medical centers throughout the country is well underway as planned. These data will assist researchers to rapidly access information about the distribution and genetic patterns of this disease.

Evaluation of SNOMED CT Content Coverage: A Systematic Literature Review.

BACKGROUND: One of the most important features studied for adoption of terminologies is content coverage. The content coverage of SNOMED CT as a large scale terminology system has been evaluated in different domains by various methods. OBJECTIVES: This study provided an overview of studies evaluating SNOMED CT content coverage. METHODS: This systematic literature review covered Scopus, Embase, PubMed and Web of Science. It included studies in English language with accessible full-text from the beginning of 2002 to November 2017. RESULTS: Reviewing 62 studies revealed that 76 percent of studies were carried out in the US and other countries started to study in this regard from 2007. Most of the studies focused on the comparison of SNOMED CT with disease classifications in the domain of "diagnosis and problem list". CONCLUSION: Studying the trend of studies in different countries shows that SNOMED CT content coverage is not limited to the early stages of SNOMED CT adoption. However, evaluation methods are likely different due to the stage of SNOMED CT implementation. Therefore, it is recommended to identify and compare evaluation methods of SNOMED CT content coverage in future studies.

A Survey of Managers' Access to Key Performance Indicators via HIS: The Case of Iranian Teaching Hospitals.

BACKGROUND: The challenges of using health information systems in developing countries are different from developed countries for various reasons such as infrastructure and data culture of organizations. OBJECTIVE: The aim of this study is to assess managers' access to key performance indicators (KPI) via Hospital Information System (HIS) in teaching hospitals of Iran. METHODS: All managers (Census method) of the four teaching hospitals affiliated to Hormozgan University of Medical Sciences (HUMS) were included in this study. KPIs which are linked to the strategic objectives of organizations were adopted from the strategic plan of HUMS. The questionnaire used in this study included three categories: Financial, Human Resources and clinical. One-sample t-test was used and the significant difference score was calculated for the acceptable level. RESULTS: We found that HIS cannot facilitate access to KPIs for managers in the main categories, but it was effective in two subcategories of income (p = 0.314) and salary (P = 0.289)). CONCLUSION: A study of barriers to the use of managers of HIS in hospitals is suggested.