Document Type : Original Article
Authors
- . Mostafa Shanbehzadeh 1
- . Hadi Kazemi-Arpanahi 2
- . Arezo Arzani-Birgani 2
- . Azimeh Karimyan 3
- . Fatemeh Mobasheri 2
1 Department of Health Information Technology, School of Paramedical, Ilam University of Medical Sciences, Ilam
2 Department of Health Information Technology, Abadan Faculty of Medical Sciences, Abadan
3 Department of Public Health, Abadan Faculty of Medical Sciences, Abadan, Iran
Abstract
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.
Keywords
Ruilope LM. Ambulatory blood pressure monitoring in daily
clinical practice – the Spanish ABPM Registry experience.
European Journal of Clinical Investigation 2016;46:92-8. doi:
10.1111/eci.12565. Epub 2015 Dec 23.
2. Aleali AM, Latifi SM, Rashidi H, Payami SP, Sabet A. Prevalence of
hypertension and prehypertension in adolescence in Ahvaz, Iran.
Diabetes & Metabolic Syndrome: Clinical Research & Reviews.
2017;11:S547-S50. doi: 10.1016/j.dsx.2017.04.002.
3. Katibeh M, Sanjari Moghaddam A, Yaseri M, Neupane D,
Kallestrup P, Ahmadieh H. Hypertension and associated factors
in the Islamic Republic of Iran: A population-based study. East
Mediterr Health J 2019;25.
4. Kim H, Andrade FCD. Diagnostic status of hypertension on
the adherence to the Dietary Approaches to Stop Hypertension
(DASH) diet. Preventive Medicine Reports 2016;4:525-31.
doi: 10.1016/j.pmedr.2016.09.009.
5. Zhou Y, Jia L, Lu B, Gu G, Hu H, Zhang Z, et al. Updated
hypertension prevalence, awareness, and control rates based on
the 2017ACC/AHA high blood pressure guideline. The Journal
of Clinical Hypertension 2019. doi: 10.1111/jch.13564.
6. Patel P, Ordunez P, DiPette D, Escobar MC, Hassell T, Wyss F,
et al. Improved Blood Pressure Control to Reduce Cardiovascular
Disease Morbidity and Mortality: The Standardized Hypertension
Treatment and Prevention Project. The Journal of Clinical
Hypertension 2016;18:1284-94. doi: 10.1111/jch.12861.
7. Ndanuko RN, Tapsell LC, Charlton KE, Neale EP, Batterham MJ.
Associations between Dietary Patterns and Blood Pressure in a
Clinical Sample of Overweight Adults. Journal of the Academy
of Nutrition and Dietetics. 2017;117:228-39. doi: 10.1016/j.
jand.2016.07.019.
8. Motlagh Z, Fazel S, Chaman R, Ghafari SR, Parisay Z,
Golabi MR, et al. Knowledge, treatment, control, and risk factors
for hypertension among adults in Southern Iran. International
journal of hypertension 2015;2015. doi: 10.1155/2015/897070.
9. Sadeghi M, Talaei M, Gharipour M, Oveisgharan S, Nezafati P,
Dianatkhah M, et al. Anthropometric indices predicting incident
hypertension in an Iranian population: The Isfahan cohort study.
Anatol J Cardiol 2019;22:33-43. doi: 10.14744/AnatolJCardiol.
10. Korngut L, Genge A, Johnston M, Benstead T, Bourque P,
Briemberg H, et al. Establishing a Canadian registry of patients with
amyotrophic lateral sclerosis. Canadian Journal of Neurological
Sciences 2013;40:29-35. doi: 10.1017/s0317167100012919.
11. Bergin K, Moore E, McQuilten Z, Wood E, Augustson B,
Blacklock H, et al. Design and development of the Australian
and New Zealand (ANZ) myeloma and related diseases registry.
BMC medical research methodology 2016;16:151. doi: 10.1186/
s12874-016-0250-z.
12. LeBrun EEW. Registries as tools for clinical excellence and the
development of the Pelvic Floor Disorders Registry. Obstetrics and
Gynecology Clinics 2016;43:121-30. doi: 10.1016/j.ogc.2015.10.006.
13. McBride D, Dohan D, Handley MA, Powe NR, Tuot DS.
Developing a CKD registry in primary care: provider attitudes
and input. American Journal of Kidney Diseases. 2014;63:577-83.
doi: 10.1053/j.ajkd.2013.10.012.
14. Rodrigues C, Vaz J, Aristimunho P, Vacca C, Verboski B, Kalil R.
Management of Standardised, Interoperable Clinical Registries:
Visioning Quality of Care and Clinical Research. Journal of the
International Society for Telemedicine and eHealth. 2017;5:(GKR);
e64:1-5.
15. Mercuri E, Finkel R, Scoto M, Hall S, Eaton S, Rashid A, et al.
Development of an academic disease registry for spinal muscular
atrophy. Neuromuscular Disorders. 2019. doi: 10.1016/j.
nmd.2019.08.014.
16. Motedayen M, Sarokhani D, Ghiasi B, Khatony A,
Hasanpour Dehkordi A. Prevalence of Hypertension in Renal
Diseases in Iran: Systematic Review and Meta-Analysis. I Int J
Prev Med 2019;10:124. doi: 10.4103/ijpvm.IJPVM_522_18.
17. Bellgard MI, Walker CE, Napier KR, Lamont L, Hunter AA,
Render L, et al. Design of the Familial Hypercholesterolaemia
Australasia Network Registry: Creating opportunities for greater
international collaboration. J Atheroscler Thromb. 2017:37507.
doi: 10.5551/jat.37507.
18. Posnenkova O, Kiselev A, Gridnev V, Schwartz V, Dovgalevskyi PY,
Oshchepkova E. Blood pressure control in primary care patients
with arterial hypertension: analysing the Hypertension Register
data. Cardiovascular therapy and prevention 2012;11:4-11.
19. Chazova I, Ratova L, Boytsov S, Nebieridze D, Karpov YuA BY.
Diagnosis and treatment of hypertension (Guidelines of Russian
Society of Hypertension and Russian Society of Cardiology).
Sistemnye gipertenzii. 2010;3:5-26.
20. Mancia G, Fagard R, Narkiewicz K, Redon J, Zanchetti A,
Boehm M, et al. 2013 ESH/ESC guidelines for the management
of arterial hypertension: the Task Force for the Management of
Arterial Hypertension of the European Society of Hypertension
(ESH) and of the European Society of Cardiology (ESC). J
Hypertens 2013;31:1925-38. doi: 10.1097/HJH.0b013e328364ca4c.
21. Weintraub WS, Karlsberg RP, Tcheng JE, Boris JR, Buxton
AE, Dove JT, et al. ACCF/AHA 2011 key data elements and
definitions of a base cardiovascular vocabulary for electronic
health records: a report of the American College of Cardiology
Foundation/American Heart Association Task Force on Clinical
Data Standards. J Am Coll Cardiol 2011;58:202-22. doi:10.1016/jjacc.2011.05.001.
22. McFadden N, Daniel B, Hoyt R, Snider D. Development of a WebBased Registry to Support Diabetes Care in Free Medical Clinics.
Perspect Health Inf Manag. 2017;14(Winter):1a-a.
23. Shahraki AD, Safdari R, Shahmoradi L, Malak JS,
Pourghaz B, Ghabaee M. Acute Stroke Registry Planning
Experiences. J Registry Manag 2018;45:37-42.
24. Cox N, Brennan A, Dinh D, Brien R, Cowie K, Stub D, et al.
Implementing Sustainable Data Collection for a Cardiac Outcomes
Registry in an Australian Public Hospital. Heart, lung &
circulation 2018;27:464-8. doi: 10.1016/j.hlc.2017.01.023.
25. Kazemi-Arpanahi H, Vasheghani-Farahani A, Baradaran A,
Mohammadzadeh N, Ghazisaeedi M. Developing a Minimum
Data Set (MDS) for Cardiac Electronic Implantable Devices
Implantation. Acta Inform Med. 2018;26:164-8. doi: 10.5455/
aim.2018.26.164-168.
26. Kazemi-Arpanahi H, Vasheghani-Farahani A, Baradaran A,
Ghazisaeedi M, Mohammadzadeh N, Bostan H. Development
of a minimum data set for cardiac electrophysiology study
ablation. Journal of education and health promotion. 2019;8:101.
doi: 10.4103/jehp.jehp_232_18.
27. Dunn WD, Jr., Cobb J, Levey AI, Gutman DA. REDLetr: Workflow
and tools to support the migration of legacy clinical data capture
systems to REDCap. International journal of medical informatics.
2016;93:103-10. doi: 10.1016/j.ijmedinf.2016.06.015.
28. Barchard K, Verenikina Y. Improving data accuracy: Selecting the
best data checking technique. Computers in Human Behavior.
2013;29:1917-22.doi: https://doi.org/10.1016/j.chb.2013.02.021.
29. HĂŞMĂŞANU MG, BOLBOACĂ SD, Jäntschi L, Zaharie GC,
Drugan TC. Design and implementation of data collection
instruments for neonatology research. Applied Medical
Informatics. 2014;35(4):35-44. doi: 10.1002/hast.407.
30. Moeini B, Hazavehei M, Moghimbeigi A, Homayonfar S,
Moslem A, Jamal S, et al. Relationship between Adults' Blood
Pressure, Occupation and Physical Activity: A cross-sectional
study among 20 to 65 years adults in Sabzevar, Iran. 2019:2015-6.
31. Lindoerfer D, Mansmann U. Enhancing requirements engineering
for patient registry software systems with evidence-based
components. Journal of biomedical informatics 2017;71:147-53.
doi: 10.1016/j.jbi.2017.05.013.
32. Rojas JI, Carrá A, Correale J, Cristiano E, Liguori NF, Alonso R,
et al. The Argentinean multiple sclerosis registry (RelevarEM):
Methodological aspects and directions. Multiple sclerosis and
related disorders. 2019;32:133-7. doi: 10.1016/j.msard.2019.05.004.
33. Sharif-Alhoseini M, Azadmanjir Z, Sadeghi-Naini M, Ghodsi Z,
Naghdi K, Mohammadzadeh M, et al. National Spinal Cord
Injury Registry of Iran (NSCIR-IR)–a critical appraisal of its
strengths and weaknesses. Chinese Journal of Traumatology.
2019. doi: 10.1016/j.cjtee.2019.05.003.
34. Arthursson AJ, Furnes O, Espehaug B, Havelin LI, Söreide JA.
Validation of data in the Norwegian Arthroplasty Register
and the Norwegian Patient Register: 5,134 primary total hip
arthroplasties and revisions operated at a single hospital
between 1987 and 2003. Acta orthopaedica. 2005;76:823-8. doi:
10.1080/17453670510045435.
35. Barsoum WK, Higuera CA, Tellez A, Klika AK, Brooks PJ,
Patel PD. Design, implementation, and comparison of methods
for collecting implant registry data at different hospital types.
The Journal of arthroplasty. 2012;27:842-50. e1. doi: 10.1016/j.
arth.2011.12.014.
36. Golan R, Bernstein A, Sedrakyan A, Daskivich TJ, Du DT, Ehdaie B,
et al. Development of a nationally representative coordinated
registry network for prostate ablation technologies. The Journal
of urology. 2018;199:1488-93. doi: 10.1016/j.juro.2017.12.058.
37. Ingvarsson G, Dufour DN, Killasli H, Sartorius K, Lapins J,
Skau PA, et al. Development of a clinical Scandinavian registry for
hidradenitis suppurativa; HISREG. Acta dermato-venereologica.
2013;93:350-1. doi: 10.2340/00015555-1468.
38. Davey CJ, Slade SV, Shickle D. A proposed minimum data set
for international primary care optometry: A modified Delphi
study. Ophthalmic and Physiological Optics 2017;37:428-39. doi:
10.1111/opo.12372.
39. Won B, Carey GB, Tan Y-HC, Bokhary U, Itkonen M, Szeto K,
et al. The Chicago Thoracic Oncology Database Consortium: A
Multisite Database Initiative. Cureus. 2016;8(3). doi: 10.7759/
cureus.533.
40. Jaffe MG, Lee GA, Young JD, Sidney S, Go AS. Improved
blood pressure control associated with a large-scale
hypertension program. Jama 2013;310:699-705. doi: 10.1001/
jama.2013.108769.
)