Volume 28, Issue 3 (12-2025)
jha 2025, 28(3): 13-27 |
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Frokh Eslamlo S, Jebraeily M, Ghasemnejad Berenji H, Moghaddam Tabrizi F, Ayatollahi H. Minimum data set for implementing a registry for women infected with human papillomavirus. jha 2025; 28 (3) :13-27
URL: http://jha.iums.ac.ir/article-1-4707-en.html
URL: http://jha.iums.ac.ir/article-1-4707-en.html
Shima Frokh Eslamlo1 
, Mohammad Jebraeily2 , Hojat Ghasemnejad Berenji3 , Fatemeh Moghaddam Tabrizi4 , Haleh Ayatollahi5
, Mohammad Jebraeily2 , Hojat Ghasemnejad Berenji3 , Fatemeh Moghaddam Tabrizi4 , Haleh Ayatollahi5
1- Student Research Committee, Urmia University of Medical Sciences, Urmia, Iran.
2- Department of Health Information Technology, School of Allied Medical Sciences, Urmia University of Medical Sciences, Urmia, Iran. ,jabraily@gmail.com
3- Reproductive Health Research Center, Clinical Research Institute, Urmia University of Medical Sciences, Urmia, Iran.
4- School of Nursing and Midwifery, Urmia University of Medical Sciences, Urmia, Iran.
5- Department of Obstetrics and Gynecology, School of Medicine, Urmia University of Medical Sciences, Urmia, Iran.
2- Department of Health Information Technology, School of Allied Medical Sciences, Urmia University of Medical Sciences, Urmia, Iran. ,
3- Reproductive Health Research Center, Clinical Research Institute, Urmia University of Medical Sciences, Urmia, Iran.
4- School of Nursing and Midwifery, Urmia University of Medical Sciences, Urmia, Iran.
5- Department of Obstetrics and Gynecology, School of Medicine, Urmia University of Medical Sciences, Urmia, Iran.
Abstract: (86 Views)
Introduction: Human papillomavirus (HPV) is one of the most prevalent viruses worldwide and plays a major role in the development of cervical cancer. Recording and managing data related to this virus is of particular importance, as it can significantly contribute to infection control. This study aimed to determine the minimum data set (MDS) required for implementing a registry system for women infected with HPV in Iran.
Methods: This descriptive cross-sectional study was conducted in 2025 in three phases. First, relevant data elements were identified through a literature review and the analysis of patients’ medical records from Kosar Hospital, Iran. Next, the minimum data set (MDS) was categorized by a focus group of five experts, including two gynecologic oncologists, two reproductive health specialists, and a health information management professional. Finally, a Delphi questionnaire was developed and administered to 20 experts. Data were analyzed using descriptive statistics in Microsoft Excel.
Results: Out of the 160 data elements included in the initial MDS, 110 elements achieved over 75% consensus in the first round of the Delphi process, and 20 elements reached the same level of agreement in the second round. Thirty data elements with less than 50% agreement were excluded. In total, 130 data elements were finalized and categorized into five main domains: demographic information, patient history, clinical information, laboratory data, and follow-up information.
Conclusion: Comprehensive recording of the HPV-related MDS can enable the assessment of virus transmission patterns, the identification of at-risk populations, and the monitoring of all aspects related to prevention and care. Considering the necessity of maintaining confidentiality and data security for patients with HPV, it is essential that identifiable information be converted into encrypted identifiers.
Methods: This descriptive cross-sectional study was conducted in 2025 in three phases. First, relevant data elements were identified through a literature review and the analysis of patients’ medical records from Kosar Hospital, Iran. Next, the minimum data set (MDS) was categorized by a focus group of five experts, including two gynecologic oncologists, two reproductive health specialists, and a health information management professional. Finally, a Delphi questionnaire was developed and administered to 20 experts. Data were analyzed using descriptive statistics in Microsoft Excel.
Results: Out of the 160 data elements included in the initial MDS, 110 elements achieved over 75% consensus in the first round of the Delphi process, and 20 elements reached the same level of agreement in the second round. Thirty data elements with less than 50% agreement were excluded. In total, 130 data elements were finalized and categorized into five main domains: demographic information, patient history, clinical information, laboratory data, and follow-up information.
Conclusion: Comprehensive recording of the HPV-related MDS can enable the assessment of virus transmission patterns, the identification of at-risk populations, and the monitoring of all aspects related to prevention and care. Considering the necessity of maintaining confidentiality and data security for patients with HPV, it is essential that identifiable information be converted into encrypted identifiers.
Type of Study: Research |
Subject:
Health Information Management
Received: 2025/08/29 | Accepted: 2025/11/27 | Published: 2025/12/9
Received: 2025/08/29 | Accepted: 2025/11/27 | Published: 2025/12/9
References
1. Azeez ZF, Al-Saadi ZH, Masood QK. Diagnostic approaches for sexually transmitted infections in clinical microbiology: A comprehensive review. International Journal of Medical Science and Dental Health. 2024;1:2. [DOI:10.55640/ijmsdh-10-02-07]
2. Shanker N. To study the clinical and epidemiological characteristics of sexually transmitted infection in patients visiting a specialized hospital. 2024;13(2):183-187. Available from: https://www.ijlbpr.com/uploadfiles/36vol13issue2pp183-187.20240221053350.pdf
3. Subasinghe AK, Nguyen M, Wark JD, Tabrizi SN, Garland SM. Targeted Facebook advertising is a novel and effective method of recruiting participants into a human papillomavirus vaccine effectiveness study. (JMIR) The Jornal of Medical Internet Research Protocols. 2016;5(3):e5679. [DOI:10.2196/resprot.5679]
4. Kesheh MM, Keyvani H. The prevalence of HPV genotypes in Iranian population: an update. Iranian Journal of Pathology. 2019;14(3):197-203.
https://doi.org/10.30699/IJP.2019.90356.1861 [DOI:10.30699/ijp.2019.90356.1861]
5. Jailani AS, Balqis-Ali NZ, Tang KF, Fun WH, Samad SA, Jahaya R, et al. Prevalence and sociodemographic predictors of high-risk vaginal human papillomavirus infection: findings from a public cervical cancer screening registry. BMC Public Health. 2023;23(1):2243. [DOI:10.1186/s12889-023-17132-2]
6. Teitelman AM, Kim SK, Waas R, DeSenna A, Duncan R. Development of the NowIKnow mobile application to promote completion of HPV vaccine series among young adult women. Journal of Obstetric, Gynecologic & Neonatal Nursing. 2018;47(6):844-852. [DOI:10.1016/j.jogn.2018.06.001]
7. Dadipoor S, Alavi A, Kader Z, Eshaghi Sani Kakhaki H, Mohseni S, Shahabi N. Utilization of cervical cancer screening services and its associated factors in Iran: a case-control study. Infections Agents Cancer. 2023;18(1):17. [DOI:10.1186/s13027-023-00496-w]
8. Khan TM, Buksh MA, Rehman IU, Saleem A. Knowledge, attitudes, and perception towards human papillomavirus among university students in Pakistan. Papillomavirus Research. 2016;2:122-127. https://doi:10.1016/j.pvr.2016.06.001 [DOI:10.1016/j.pvr.2016.06.001]
9. Dreizzen E, Lima MS, Kitagawa RB, Corrons FJ, Spinelli OM. Development of a database for cervical cytology reports. Informatics in Primary Care. 2011;19. https://doi:10.14236/jhi.v19i2.803 [DOI:10.14236/jhi.v19i2.803]
10. Gutiérrez-Enríquez SO, Guerrero-Zacarías MC, Oros-Ovalle C, Terán-Figueroa Y, Acuña-Aradillas JM. Computer system for the capture and preparation of cytopathological reports for cervical cancer detection and his utility in training for health personnel. European Journal of Investigation in Health, Psychology and Education. 2022;12(9):1323-33. [DOI:10.3390/ejihpe12090092]
11. Klinge B, Lundström M, Rosén M, Bertl K, Klinge A, Stavropoulos A. Dental implant quality register a possible tool to further improve implant treatment and outcome. Clinical Oral Implants Research. 2018;29:145-51. [DOI:10.1111/clr.13268]
12. Mandavia R, Knight A, Phillips J, Mossialos E, Littlejohns P, Schilder A. What are the essential features of a successful surgical registry? A systematic review. BMJ Open. 2017;7(9):e017373. [DOI:10.1136/bmjopen-2017-017373]
13. Naemi R, Shahmoradi L, Rokn A, Sohrabi N, Barikani HR. Development of a Minimum data set for dental implants registry. Frontiers in Dentistry. 2023;20:22. [DOI:10.18502/fid.v20i22.13049]
14. Jemt T. Implant survival in the edentulous Jaw-30 years of experience. part I: a retro-prospective multivariate regression analysis of overall implant failure in 4,585 consecutively treated arches. International Journal of Prosthodontics. 2018;31(5):425-35. [DOI:10.11607/ijp.5875]
15. Kordbacheh Changi K, Finkelstein J, Papapanou PN. Peri-implantitis prevalence, incidence rate, and risk factors: A study of electronic health records at a US dental school. Clinical Oral Implants Research. 2019;30(4):306-314. https://doi:10.1111/clr.13416 [DOI:10.1111/clr.13416]
16. Ahmadi M, Alipour J, Mohammadi A, Khorami F. Development a minimum data set of the information management system for burns. Burns. 2015;41(5):1092-1099. https://doi:10.1016/j.burns.2014.12.009 [DOI:10.1016/j.burns.2014.12.009]
17. Hoque DME, Kumari V, Hoque M, Ruseckaite R, Romero L, Evans SM. Impact of clinical registries on quality of patient care and clinical outcomes: a systematic review. PLoS One. 2017;12(9): e0183667. [DOI:10.1371/journal.pone.0183667]
18. Hosseini A, Moghaddasi H, Jahanbakhsh M. Designing minimum data sets of diabetes mellitus: basis of effectiveness indicators of diabetes management. Health Information Management. 2010;7(3). [DOI:10.1371/journal.pone.0183667]
19. Ahmadi M, Mohammadi A, Chraghbaigi R, Fathi T, Baghini MS. Developing a minimum data set of the information management system for orthopedic injuries in Iran. Iranian Red Crescent Medical Journal. 2014;16(7): e17020. [DOI:10.5812/ircmj.17020]
20. Lovrec VG, Arko D, Takac I. Cervix-Online computer program: 27 years of hospital-based clinical registry for cervical cancer at the University Medical Centre Maribor. Radiology and Oncology. 2021;56(2):198-205. [DOI:10.2478/raon-2021-0054]
21. El-Zein M, Coutlée F, Tellier P-P, Roger M, Franco EL, Burchell AN, et al. Human papillomavirus infection and transmission among couples through heterosexual activity (HITCH) cohort study: protocol describing design, methods, and research goals. The Jornal of Medical Internet Research Protocols. 2019;8(1): e11284. [DOI:10.2196/11284]
22. Arroyo Mühr LS, Wang J, Hassan SS, Yilmaz E, Elfström MK, Dillner J. Nationwide registry based trial of risk stratified cervical screening. The International Journal of Cancer. 2025;156(2):379-388. [DOI:10.1002/ijc.35142]
23. Woo YL, Khoo SP, Gravitt P, Hawkes D, Rajasuriar R, Saville M. The implementation of a primary HPV self-testing cervical screening program in Malaysia through Program ROSE-lessons learnt and moving forward. Current Oncology. 2022;29(10):7379-87. [DOI:10.3390/curroncol29100579]
24. Andreu-Perez J, Poon CC, Merrifield RD, Wong ST, Yang G-Z. Big data for health. IEEE Journal of Biomedical and Health Informatics. 2015;19(4):1193-208. [DOI:10.1109/JBHI.2015.2450362]
25. Harron K, Dibben C, Boyd J, Hjern A, Azimaee M, Barreto ML, et al. Challenges in administrative data linkage for research. Big Data Society. 2017;4(2):2053951717745678. [DOI:10.1177/2053951717745678]
26. Zhang M, Yang J, Li Y, Li T, Dong Z, et al. Minimum data set and metadata for active vaccine safety surveillance: systematic review. The Journal of Medical Internet Research Public Health Surveillance. 2025;11(1): e63161. [DOI:10.2196/63161]
27. Li Y, Wang R, Zhang J, Chen Y-T, Zhan S, Guo Y, et al. A scoping review of human papillomavirus related data system in China. BMC Infections Diseases. 2025;25(1):873. [DOI:10.1186/s12879-025-11106-y]
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