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 Table of Contents 
ORIGINAL ARTICLE
Year : 2019  |  Volume : 8  |  Issue : 2  |  Page : 449-454  

ART Registries–Characteristics and experiences: A comparative study


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 Publication28-Feb-2019

Correspondence Address:
Dr. Reza Safdari
Department of Health Information Management, School of Allied Medical Sciences, Tehran University of Medical Sciences, Tehran
Iran
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Source of Support: None, Conflict of Interest: None


DOI: 10.4103/jfmpc.jfmpc_453_18

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  Abstract 


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 Aug 18];8:449-54. Available from: http://www.jfmpc.com/text.asp?2019/8/2/449/253059




  Introduction Top


Infertility is one of the most important health problems in all societies and all ages.[1] It is also one of the most important challenges of human life.[2] 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.[3] 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.[2],[4],[5],[6],[7],[8] Infertile women similar to cancer patients or patients with heart failure may encounter some level of distress.[9] 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.[10]

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).[1] ART has become increasingly popular in the world.[11] 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.[11],[12] 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.[13] A registry system can provide accurate statistics on the activities and consequences, and ensures the quality control.[14] 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.[15] 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.[16] 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 Top


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

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  Results Top


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.[11] 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 Top


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.[30] 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.[30],[31],[32],[33] 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.[34] The data of a registry system are a documented file that systematically collects similar data in order to render scientific services or predetermined policies.[35] 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.[36] Registry systems allow data to be compared so that, the success rate of ART techniques is well defined.[37],[38] 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.[39]


  Conclusions Top


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

Nil.

Conflicts of interest

There are no conflicts of interest.



 
  References Top

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