Design and Development of a Minimum Data Set for Phenylketonuria Disease

Q: How can I download an article?

To download an article from SID, first log in to the site, search for the article title, and click on the 'Download Article' option.

Q: How can I download an ISI article?

To download an ISI article on SID, enter the keyword or article title in the search bar, view the relevant results, click on the desired article, and select the 'Download Article' option.

Q: How can I access the SID database?

To access the SID database, visit SID.ir, create an account, and log in to access scientific resources.

Q: Is downloading articles from SID free?

Some articles on SID are available for free, while others require payment. Details are specified on the article's page.

MOULAEI KHADIJEH; Bavafa Bavafa

مرکز اطلاعات علمی Scientific Information Database (SID) - Trusted Source for Research and Academic Resources

Journal Paper

Paper Information

Journal: Journal of Health and Biomedical Informatics Year:2021 | Volume:8 | Issue:1 Page(s): 33-41

Download Full-Text

Persian Verion

View:

335

Download:

Cites:

Information Journal Paper

Title

Design and Development of a Minimum Data Set for Phenylketonuria Disease

Author(s)

MOULAEI KHADIJEH | Bavafa Bavafa | Issue Writer Certificate

Keywords

Minimum data setQ1

Effective IndicatorsQ1

ManagementQ2

ControlQ1

PhenylketonuriaQ1

Abstract

Introduction: Phenylketonuria is one of the most common autosomal recessive metabolic diseases, characterized by a wide range of neuropsychological and neurocognitive disorders. Without proper care, Control, and Management, this disease can lead to severe mental retardation and neurobehavioral disorders. Therefore, the objective of this study was to design and develop a Minimum data set (MDS) for Phenylketonuria disease to introduce indicators effective in further Management, Control, and monitoring of this disease. Method: The present study was a descriptive-analytical one that was conducted in two stages. In the first stage, a comprehensive review of PubMed, Web of Science, and Scopus databases was performed to identify Management and clinical data elements. Then, the necessary data elements were extracted from the studies and put into a questionnaire. In the second stage, 15 pediatricians, nutritionists, psychiatrists, and psychologists completed the designed questionnaire using the two-stage Delphi technique. The descriptive statistics as well as SPSS 23 were used to analyze the data. Results: A total of 133 Management and clinical data elements were extracted from the studies. These data elements were divided into three groups of information and 14 categories. According to experts, consensus and collective agreement were reached on 125 data elements in 13 categories. The category of congenital defects was the only category all data elements of which were excluded in the study. Conclusion: Given the clinical and economic challenges that Phenylketonuria patients face, determining the Minimum data set can enable effective Control and Management of this disease, reduce costs, and improve Management of information relevant to these patients.

Cites

No record.

References

Cite

APA: Copy

MOULAEI, KHADIJEH, & Bavafa, Bavafa. (2021). Design and Development of a Minimum Data Set for Phenylketonuria Disease. JOURNAL OF HEALTH AND BIOMEDICAL INFORMATICS, 8(1 ), 33-41. SID. https://sid.ir/paper/412241/en

Vancouver: Copy

MOULAEI KHADIJEH, Bavafa Bavafa. Design and Development of a Minimum Data Set for Phenylketonuria Disease. JOURNAL OF HEALTH AND BIOMEDICAL INFORMATICS[Internet]. 2021;8(1 ):33-41. Available from: https://sid.ir/paper/412241/en

IEEE: Copy

KHADIJEH MOULAEI, and Bavafa Bavafa, “Design and Development of a Minimum Data Set for Phenylketonuria Disease,” JOURNAL OF HEALTH AND BIOMEDICAL INFORMATICS, vol. 8, no. 1 , pp. 33–41, 2021, [Online]. Available: https://sid.ir/paper/412241/en

Related Journal Papers

No record.

Related Seminar Papers

No record.

Related Plans

No record.

Recommended Workshops