Instructional Design, Development and Evaluation of Congenital Hypothyroidism Registry System

Shahmoradi, Leila; Ehtesham, Hamideh; Mehraeen, Esmaeil; Rostampour, Nima; Tahmasbian, Shahram; Ghasempour, Morteza

doi:10.14704/web/v16i2/a203

Cited by 4 publications

(3 citation statements)

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“…Of the studies that referred to a specific domain, 2 studies were dedicated to the composition of MDS for juvenile dermatomyositis [40,41], 2 to metabolic disorders [36,45], 1 to nonmalignant RD [33], and 1 to undiagnosed RDs [28]. Other specific studies included mucopolysaccharidosis type I [34], homocystinuria and methylation defects [42], primary immunodeficiencies [29], cystic fibrosis [38], congenital hypothyroidism [39], adenosine deaminase severe combined immunodeficiency [35], atypical hemolytic uremic syndrome [30], and inflammatory rheumatic diseases [46], with 1 study each.…”

Section: Domains Of Healthmentioning

confidence: 99%

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The Minimum Data Set for Rare Diseases: Systematic Review

Bernardi¹,

Oliveira²,

Yamada³

et al. 2023

J Med Internet Res

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Background The minimum data set (MDS) is a collection of data elements to be grouped using a standard approach to allow the use of data for clinical and research purposes. Health data are typically voluminous, complex, and sometimes too ambiguous to generate indicators that can provide knowledge and information on health. This complexity extends further to the rare disease (RD) domain. MDSs are essential for health surveillance as they help provide services and generate recommended population indicators. There is a bottleneck in international literature that reveals a global problem with data collection, recording, and structuring in RD. Objective This study aimed to identify and analyze the MDSs used for RD in health care networks worldwide and compare them with World Health Organization (WHO) guidelines. Methods The population, concept, and context methodology proposed by the Joanna Briggs Institute was used to define the research question of this systematic review. A total of 4 databases were reviewed, and all the processes were reported using the PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) methodology. The data elements were analyzed, extracted, and organized into 10 categories according to WHO digital health guidelines. The quality assessment used the STROBE (Strengthening the Reporting of Observational Studies in Epidemiology) checklist. Results We included 20 studies in our review, 70% (n=14) of which focused on a specific health domain and 30% (n=6) of which referred to RD in general. WHO recommends that health systems and networks use standard terminology to exchange data, information, knowledge, and intelligence in health. However, there was a lack of terminological standardization of the concepts in MDSs. Moreover, the selected studies did not follow the same standard structure for classifying the data from their MDSs. All studies presented MDSs with limitations or restrictions because they covered only a specific RD, or their scope of application was restricted to a specific context or geographic region. Data science methods and clinical experience were used to design, structure, and recommend a fundamental global MDS for RD patient records in health care networks. Conclusions Our study highlights the difficulties in standardizing and categorizing findings from MDSs for RD because of the varying structures used in different studies. The fundamental RD MDS designed in this study comprehensively covers the data needs in the clinical and management sectors. These results can help public policy makers support other aspects of their policies. We highlight the potential of our results to help strategic decisions related to RD. Trial Registration PROSPERO CRD42021221593; https://www.crd.york.ac.uk/prospero/display_record.php?RecordID=221593 International Registered Report Identifier (IRRID) RR2-10.1016/j.procs.2021.12.034

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Section: Domains Of Healthmentioning

confidence: 99%

“…Other studies have proposed MDSs for specific groups of RDs [28][29][30][34][35][36][38][39][40][41][42]45,46], populations, and territories [2,29,33,43,44] based on different methodologies. For example, previous studies have proposed MDSs for RD in national and continental contexts.…”

Section: Principal Findingsmentioning

confidence: 99%

The Minimum Data Set for Rare Diseases: Systematic Review

Bernardi¹,

Oliveira²,

Yamada³

et al. 2023

J Med Internet Res

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“…By developing the disease information registry system, Shahmoradi et al collected and recorded the screening program, treatment, and follow-up of congenital hypothyroidism to evaluate the efficiency and effectiveness of the screening program in Iran. The study results showed that by identifying the problems of the screening program, this system has a positive effect on improving the quality of the program and improving the accuracy and correctness of the input information [15]. By creating a comprehensive database on all Scottish infants (with high TSH), M-Ray et al assessed the effectiveness of the screening program.…”

Section: Distribution Of Articles Based On the Main Objectives Of The Information Registry Systemmentioning

confidence: 99%

Information Registry System on Congenital Hypothyroidism: A Systematic Review

et al. 2021

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Background: Congenital hypothyroidism is the most common congenital disorder of the endocrine system, leading to preventable mental retardation. Objectives: We aimed to evaluate the current status of congenital hypothyroidism information registry systems. Methods: In this systematic review 290 papers identified. A total of 254 articles were screened, of which 17 qualified articles were selected through the databases of Scopus, science direct ProQuest, PubMed, as well as the search engine Google scholar (no restriction on date of publication) up to 2020, were searched. Inclusion criteria were the Articles with the English language that examining information registry systems on congenital hypothyroidism. Articles whose full texts were not accessible, case reports, and letters to the editor had to be excluded. Results: This study showed that the primary goal of nearly half (50%) of the information registry systems for congenital hypothyroidism is to evaluate the efficiency and effectiveness of the screening program. Other information registry systems for congenital hypothyroidism have examined the epidemiology of the disease in 4 studies (23.6%), monitoring iodine deficiency in 3 studies (18%), surveillance disease in 1 study (6%), and describing the clinical and familial features of the patient in 1 study (6%). Conclusions: Few studies have been done on developing information registry systems, and most studies have focused on the use of information systems in this field. Further comprehensive reviews are recommended to investigate the infrastructure of the commission national registry and world network to record information units on congenital hypothyroidism.

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Dos and don’ts in designing a computerized oral and lip squamous cell cancer registry

Shahmoradi,

Mahdavi,

Saffar

et al. 2023

BMC Health Serv Res

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Background In the last ten years, many countries have started to develop constructive systems for registering common diseases and cancers. In this research, we intended to determine and identify the minimum data set (MDS) required for the design of the oral and lip squamous cell cancer registration system in Iran. Methods and material At first, primary information elements related to disease registries were extracted using scientific papers published in reliable databases. After reviewing the books, related main guidelines, and 42 valid articles, the initial draft of a researcher-made questionnaire was compiled. To validate the questionnaire, two focus group meetings were held with 29 expert panel members. The final version of this questionnaire was prepared by extracting different questions and categories and receiving numerous pieces of feedback from specialists. Lastly, a final survey was conducted by the experts who were present at the previous stage. Results Out of 29 experts participating in the study, 17 (58.62%) were men and 12 (40.37%) were women. The age range of experts varies from 34 to 58 years. One hundred-fourteen items, which are divided into ten main parts, were considered the main information elements of the registry design. The main minimum data sets have pertained to the demographic and clinical information of the patient, information related to the consumed drugs, initial diagnostic evaluations of the patient, biopsy, tumor staging at the time of diagnosis, clinical characteristics of the tumor, surgery, histopathological characteristics of the tumor, pathologic stage classification, radiotherapy details, follow-up information, and disease registry capabilities. The distinctive characteristics of the oral and lip squamous cell cancer registry systems, such as the title of the disease registration programme, the population being studied, the geographic extent of the registration, its primary goals, the definition of the condition, the technique of diagnosis, and the kind of registration, are all included in a model. Conclusion The benefits of designing and implementing disease registries can include timely access to medical records, registration of information related to patient care and follow-up of patients, the existence of standard forms and the existence of standard information elements, and the existence of an integrated information system at the country level.

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Instructional Design, Development and Evaluation of Congenital Hypothyroidism Registry System

Cited by 4 publications

References 0 publications

The Minimum Data Set for Rare Diseases: Systematic Review

The Minimum Data Set for Rare Diseases: Systematic Review

Information Registry System on Congenital Hypothyroidism: A Systematic Review

Dos and don’ts in designing a computerized oral and lip squamous cell cancer registry

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