|Year : 2019 | Volume
| Issue : 2 | Page : 449-454
ART Registries–Characteristics and experiences: A comparative study
Maryam Zahmatkeshan1, Majid Naghdi2, Mojtaba Farjam3, Mehrshad Mokhtaran4, Azita Yazdani1, Zahra Mahmoudvand1, Reza Safdari1
1 Department of Health Information Management, School of Allied Medical Sciences, Tehran University of Medical Sciences, Tehran, Iran
2 Department of Anatomical Sciences, School of Medicine, Fasa University of Medical Sciences, Fasa, Iran
3 Department of Noncommunicable Diseases, Noncommunicable Diseases Research Center, School of Medicine, Fasa University of Medical Sciences, Fasa, Iran
4 Department of Health, Virtual School, Tehran University of Medical Sciences, Tehran, Iran
|Date of Web Publication||28-Feb-2019|
Dr. Reza Safdari
Department of Health Information Management, School of Allied Medical Sciences, Tehran University of Medical Sciences, Tehran
Source of Support: None, Conflict of Interest: None
Background: The incident of infertility is continuously increasing. As a result, the demand for medical care such as assisted reproductive technology (ART) technology is equally increasing. In order to manage the growing data and information collected on ART, there is a need for a registry system can provide accurate statistics about activities and outcomes and ensure the quality control. Therefore, the aim of this study was to examine and compare In vitro fertilization (IVF) and ART registries. Methods: This is a descriptive-comparative study in which data from the national ART registries of 14 selected countries in 2018 were collected. In this study, databases such as PubMed, Web of Sciences, and Scopus, as well as Google Scholar websites were searched. Results: Important aspects of the registry were studied. One of the most important goals of these systems is to collect information about ART, as well as to monitor and report the results and implications, and also implement new care plans. Conclusion: A national registry helps to better understand the scope and the effect of assisted reproduction on the health of infertile couples. By this registry system, different countries can compare the data with other countries, allowing the improvement of techniques and the best possible care for patients.
Keywords: ART registry, infertility, information system, IVF registry, registry system
|How to cite this article:|
Zahmatkeshan M, Naghdi M, Farjam M, Mokhtaran M, Yazdani A, Mahmoudvand Z, Safdari R. ART Registries–Characteristics and experiences: A comparative study. J Family Med Prim Care 2019;8:449-54
|How to cite this URL:|
Zahmatkeshan M, Naghdi M, Farjam M, Mokhtaran M, Yazdani A, Mahmoudvand Z, Safdari R. ART Registries–Characteristics and experiences: A comparative study. J Family Med Prim Care [serial online] 2019 [cited 2019 Mar 25];8:449-54. Available from: http://www.jfmpc.com/text.asp?2019/8/2/449/253059
| Introduction|| |
Infertility is one of the most important health problems in all societies and all ages. It is also one of the most important challenges of human life. Estimates suggest that by 2025, about 70% of couples will be affected by infertility. The incidence of infertility is increasing day by day, and this may be due to various reasons, such as sexually transmitted infections, stress, work pressures, urbanization, obesity, etc. Infertility has many effects on health of infertile couples. Infertility is one of the most important causes of depression and its consequences range from fear, depression, and social isolation to violence and suicide, it also affects the life satisfaction.,,,,, Infertile women similar to cancer patients or patients with heart failure may encounter some level of distress. The Centers for Disease Control and Prevention (CDC) has introduced infertility as a “public health priority” in the United States and has subsequently created an initiative to identify, prevent, and manage the infertility.
As a result of this demographic process, the demand for medical care is equally increasing and there are various types of health care such as assisted reproductive technology (ART). ART has become increasingly popular in the world. One of the most important challenges of managing the growing data is collecting reliable data on ART at a large scale and providing a computer data collection system for controlling and organizing these treatment cycles to reduce potential risks., The disease or patient registry is a rich source of information for every health care decision making, which contains supplementary sources of data and provides information on the ''real world'' activity and the effectiveness of treatment and methods. A registry system can provide accurate statistics on the activities and consequences, and ensures the quality control. The registry plays an important role in providing information to the public, patient, policy makers, and the scientific community. The results of medical activities should be collected, processed, documented, and evaluated. These data are important in monitoring ART activities, ART results and implications at the national level to identify the availability of ART clinics, the effectiveness of treatment and safety of ART methods. They also provide a strong information database for education and development of ART policy. The purpose of this study was to review and compare IVF and ART registries including objectives, data sources, responsible organization, and information elements of these systems in selected countries.
| Methods|| |
This study is a descriptive-comparative in which, the data were collected from the national ART registries of selected countries in 2018. In this study, databases such as PubMed, Web of Sciences, and Scopus, as well as Google Scholar websites were searched. Keywords; IVF registry, ART registry, Infertility, and surveillance were used along with the names of countries.
In this study, data from leading countries in the ART registry program were categorized according to the world's continents. From America, United States, Canada, and Latin American countries; from Europe, Belgium, Denmark, Germany, France, Switzerland, and Italy; from Africa, South Africa and Egypt; and from Asia and Pacific, Australia, New Zealand, Japan and India were selected. Then, the articles related to the purpose of the research were selected and sorted according to the name of the countries. Finally, the comparative results were summarized in [Table 1].
|Table 1: Name, responsible institution, objectives, minimum data set, and voluntary of registries in selected countries|
Click here to view
| Results|| |
Due to the increase in ART treatment in the world, there is a need for reporting and analyzing ART data of different countries. Today, some countries have established a registry system to evaluate and monitor the effectiveness of treatment, implications of pregnancy, and health of treated women. For this purpose, the present study examined and compared the ART and IVF registry systems of selected countries. According to the studies, one of the most important goals of the registries is to obtain and provide statistical purposes for diseases in order to plan for the future. As long as there is no valid and reliable statistics on a disease, it is virtually impossible to decide and plan for its management. Another goal is to evaluate the effectiveness of treatments, to analyze important factors, monitor the results, compare them with previous results and achieve the success rate of the methods used. Also, the most important information that is recorded in the country's registry systems include the patient's demographic information, medical history, patient's pregnancy, the diagnosis and causes of infertility, cycle information and various ART methods, ART complications, number of transmissions, results of pregnancy, deliveries, and childbirth information. The results also showed that information on anomalies and abnormalities is recorded in Germany, Latin America, Egypt, and India. Information about the donation of oocytes is not recorded in Egypt, unlike India. Recording of information by ART clinics is mandatory in Denmark, Italy, Australia, Japan, and India.
| Discussion|| |
To have an effective health care system, having a functional health information system that can be easily used to monitor and control the prevalence of disease is critically important. Information systems have critical role in helping policymakers and decision makers at all levels, to identify problems, planning, and management to evaluating health services to improve the health of individuals and communities.,,, The Disease Registry is a useful tool for the monitoring of status of health care provision based on the guidelines, development of research, and collection of data at national and international levels. The data of a registry system are a documented file that systematically collects similar data in order to render scientific services or predetermined policies. Registries provide information on the natural history of specific disorders and patient data, which are increasingly helpful in evaluation of new treatments and access of patient to costly procedures. Registry systems allow data to be compared so that, the success rate of ART techniques is well defined., Therefore, the design and implementation of registry systems help the collection and analysis of data; thus policymakers must pay particular attention to the implementation of such systems.
| Conclusions|| |
National registry system helps to better understand the scope and effect of assisted reproduction on the health of infertile couples. A registry is like a national surveillance system for ART. Collecting data on possible outcomes and side effects of ART can help patients to make appropriate decisions about infertility treatment. It helps the experts to provide patients with the optimal care with the best documented treatment methods, and also helps the evaluators to assess public health responses, develop health care policies, and ensure reimbursement of the costs. In general, it helps to better understand the ART and its role and value in helping infertile people and other medical problems.
Although there are ART systems in different countries, there is still no integrated system to compare data from different countries. By designing and implementing an appropriate ART registry system, in addition to collecting and analyzing data, the opportunity will be provided to implement new programs to improve fertility management, control and prevention, and also provide quality care for patients. These systems can be used to assess the effectiveness of ART treatments and provide information to policymakers to plan and develop a strong database for epidemiological studies.
Financial support and sponsorship
Conflicts of interest
There are no conflicts of interest.
| References|| |
De Geyter C, Fehr P, Moffat R, Gruber IM, von Wolff M. Twenty years' experience with the Swiss data registry for assisted reproductive medicine: Outcomes, key trends and recommendations for improved practice. Swiss Med Wkly 2015;145:w14087.
Fidler AT, Bernstein J. Infertility: From a personal to a public health problem. Public Health Rep 1999;114:494.
Aror A, Chouksey P. A novel approach for women's infertility detection using data mining techniques. Int J Electron Commun Comput Eng 2017;8:129-33.
Control CfD, Prevention. National Public Health Action Plan for the Detection, Prevention, and Management of Infertility. Atlanta, GA: Centers for Disease Control and Prevention; 2014.
Hardee K, Gay J, Blanc AK. Maternal morbidity: Neglected dimension of safe motherhood in the developing world. Global Public Health 2012;7:603-17.
Malik SH, Coulson NS. Computer-mediated infertility support groups: An exploratory study of online experiences. Patient Educ Couns 2008;73:105-13.
Mendoza-Palechor FE, Ariza-Colpas PP, Sepulveda-Ojeda JA, De-la-Hoz-Manotas A, Piñeres Melo M. Fertility Analysis Method Based on Supervised and Unsupervised Data Mining Techniques. 2016.
Rutstein SO, Shah IH. Infecundity Infertility and Childlessness in Developing Countries. 2004.
Hinton L, Kurinczuk JJ, Ziebland S. Infertility; isolation and the Internet: A qualitative interview study. Patient Educ Couns 2010;81:436-41.
Lewis RC, Mínguez-Alarcón L, Meeker JD, Williams PL, Mezei G, Ford JB, et al
. Self-reported mobile phone use and semen parameters among men from a fertility clinic. Reprod Toxicol 2017;67:42-7.
Malhotra N, Shah D, Pai R, Pai H, Bankar M. Assisted reproductive technology in India: A 3 year retrospective data analysis. J Hum Reprod Sci 2013;6:235-40.
] [Full text]
De Mouzon J, Bachelot A, Logerot H, Spira A. French national IVF registry: Analysis of 1986 to 1990 data. Fertil Steril 1993;59:587-95.
Workman TA. Engaging Patients in Information Sharing and Data Collection: The Role of Patient-Powered Registries and Research Networks. 2013.
Gillain N, Bogaerts K, Albert A, Guillaume M, Lesaffre E. A Web-based Support System of the Belgian Register for Assisted Procreation. 2015.
Kadi S, Wiesing U. The German IVF register as an instrument to document assisted reproductive technologies. Geburtshilfe Frauenheilkd 2016;76:680-4.
Mansour R, El-Faissal Y, Kamal O. The Egyptian IVF registry report: Assisted reproductive technology in Egypt 2005. Middle East Fertil Soc J 2014;19:16-21.
Sunderam S, Kissin DM, Crawford SB, Folger SG, Jamieson DJ, Warner L, et al
. Assisted reproductive technology surveillance — United States, 2013. MMWR Surveill Summ 2015;64:1-25.
Gunby J, Bissonnette F, Librach C, Cowan L. Assisted reproductive technologies (ART) in Canada: 2007 results from the Canadian ART Register. Fertil Steril 2011;95:542-7.e10.
Zegers-Hochschild F, Schwarze JE, Crosby J, Musri C, Urbina MT. Assisted reproduction techniques in Latin America: The Latin American Registry, 2014. Reprod Biomed Online 2017;35:287-95.
Westergaard HB, Johansen AMT, Erb K, Andersen AN. Danish National IVF Registry 1994 and 1995. Treatment, pregnancy outcome and complications during pregnancy. Acta Obstet Gynecol Scand 2000;79:384-9.
De Geyter C. Assisted reproductive medicine in Switzerland. Swiss Med Wkly 2012;142:w13569.
Dyer SJ, Kruger TF. Assisted reproductive technology in South Africa:First results generated from the South African register of assisted reproductive techniques. SAMJ: S Afr Med J 2012;102:167-70.
Fitzgerald O HK, Paul RC, Chambers GM Assisted Reproductive Technology in Australia and New Zealand 2015. Sydney: National Perinatal Epidemiology and Statistics Unit, the University of New South Wales Sydney; 2017.
Irahara M, Kuwahara A, Iwasa T, Ishikawa T, Ishihara O, Kugu K, et al
. Assisted reproductive technology in Japan: A summary report of 1992-2014 by the ethics committee, Japan Society of Obstetrics and Gynecology. Reprod Med Biol 2017;16:126-32.
Saito H, Jwa SC, Kuwahara A, Saito K, Ishikawa T, Ishihara O, et al
. Assisted Reproductive Technology in Japan: A summary report for 2015 by The ethics committee of the Japan society of obstetrics and gynecology. Reprod Med Biol 2018;17:20-8.
Hiawalyer G. A surveillance information system as a management tool: A report from Papua New Guinea. Sozial Präventivmed 2005;50:S31-2.
Ahmadi M, Damanabi S, Sadoughi F. A Comparative Study of the proposed models for the components of the national health information system. Acta Inform Med 2014;22:115-9.
Damanabi S, Abdolnejad S, Karimi G. Suggested minimum data Set for speech therapy centers affiliated to Tabriz university of medical sciences. Acta Inform Med 2015;23:243-7.
Zolala F. Health information systems in the Islamic Republic of Iran: A case study in Kerman province. East Mediterr Health J 2011;17:679-83.
World Health Organization. The World Health Report 2001: Mental Health: New Understanding, New Hope. Geneva: World Health Organization; 2001.
Ajami S, Shahpar M, Chitsaz A. Role of alzheimer disease national registry system in prevention and treatment management. J Bioeng Biomed Sci 2016;6:2.
Bellgard M, Beroud C, Parkinson K, Harris T, Ayme S, Baynam G, et al
. Dispelling myths about rare disease registry system development. Source Code Biol Med 2013;8:21.
Johns ML. Health Information Management Technology: An Applied Approach. IL: American Health Information Management Association Chicago; 2002.
McNeil A, Evans Sue M, Clissold B, Cameron P. Guidelines for the establishment and management of clinical registries. Proceedings of the Australian Commission on Safety and Quality in Health Care; 2009.
Ajami S, Lamoochi P. Comparative study on National Burn Registry in America, England, Australia and Iran. J Educ Health Promot 2014;3:106.