Essay On Birth Defect registry
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Birth Defect registry
Birth defects often referred to as congenital anomalies can be described as a major cause of infant mortality as well as childhood morbidity. It often affects around 2-4% of all babies. The birth defects are often extremely responsible for several large numbers of fetal and embryonic deaths. It is of the essence to understand that the appropriate treatment of live born infants often has a significant birth defects and it makes several heavy demands for health care resources. The ultimate value of a public health surveillance program can be said to lie in the ways in which the data that has been collected is used when it comes to the improvement of health to the public (Engels, 2006). It is of the essence to understand that state birth defects monitoring programs are no exception and in fact they are often used when it comes to the improvement of public health. There is a need for every program to have clear objectives and goals in order to drive how their monitoring data is used when it comes to the improvement of public health.
It is important to note that the objectives and purposes that are established by state birth defects monitoring programs are constantly evolving; there are some of the objectives that are traditional such as those that have to do with epidemiologic purposes when it comes to monitoring. The birth defects monitoring programs are increasingly use the data when it comes to evaluation and planning, and also most recently in the prevention strategies. This is often done in order to inform parents of children that have birth defects about the different available services that exists, the societal impact of birth defects and the referrals of the children who are in dire need of certain services (Engels, 2006). This paper is going to explore the topic of birth defect monitoring, its importance and the relevant authorities that are responsible for the collection of the data.
History of Birth defects registry
California birth defects monitoring program was one of the first registry programs to open up in the year 1982. It was authorized by the California State legislature that helped in the collection of data on different birth defects, miscarriages as well as still births. This was the pioneer program that leads to different states adopting their own set of data (Engels, 2006). The California Birth Defects Monitoring program registry data are often used when it comes to ongoing surveillance when it comes to the monitoring of different rates and trends that are used in the selection of birth defects and it often provides outcome data for the pregnancy data for the samples.
Importance of birth defects monitoring program
There are several reasons that are needed for the conducting of birth defects monitoring program. As stated earlier the value of birth defects monitoring program often lies in the way the data is collected and how it is used. There is a need for all the monitoring programs to establish their objectives and goals and make it clear their rationale for conducting public health surveillance. The first major reason for a birth defects monitoring program is epidemiologic, this includes the development of a timely baseline birth defects rates, the monitoring of the trends that exists with regards to environmental factors and lastly the provision of basis for etiological and ecologic studies (Engels, 2006). The epidemiologic purposes has been constantly put up in many monitoring programs as their purpose and objective of having a birth defects monitoring programs. The second reason for having a birth defects registry is to provide data for services planning, and also provide basis for several prevention strategies.
Thirdly, there is the educational and social reason. This reason includes the informing of the public about health importance in regards to birth defects, the informing of parents about the care and resource facilities that exist in the country, the provision of data for different and diverse studies regarding the economic impact and lastly the provision of data for the follow up studies that include the long-term effects of the several birth defects (Rothman & Lash, 2008). Finally, there is the health care as well as human services that helps in referring the affected children towards several important services and resources, the evaluation of different services and their importance towards helping the affected children and lastly the provision of the basis for clinical research.
It is important to note that the birth defects surveillance data to human services programs often include the identification of children that are in need of services in a bid to ensure that they and their families are referred in the right way. There is also the aspect of evaluation of service utilization by children that have birth defects and their families.
This often includes the careful planning of the locations of services for several particular conditions in the areas of highest frequency. A major important of the birth defects registry data is the monitoring of different trends that follow the initiation of prevention programs in a bid to evaluate the effectiveness of the different initiation programs (Rothman & Lash, 2008). One of the major public health benefits that have come with the computer age is often the enhanced compute linkage when it comes to record linkage (Engels, 2006). The data can be used in the utilization of linking vital records data in the studying of human populations.
There is record linkage with birth defect registries which allows the proper tracking of children with several health-related conditions from the point of identification to the process of access and service (Connecticut Birth Defects Registry, 2007). This has led to the linkage of the birth defects registry records to other public health programs databases and these often include newborn screening in order to conduct special education data, epidemiologic studies and this is often done in order to predict the need for services for children that have mental retardation as well as early intervention program data that is needed to assess the overlap as well as the utility of birth defects surveillance programs as find resource.
More states are finding the importance of this process and have decided to enroll their programs into several different counties in order to effectively record their data numbers.
There are several types of registries, and it is of the essence to understand that the registration of birth defects registries have to take into considerations some decisions. The first type is whether the registry will be either be a population based or hospital based (Connecticut Birth Defects Registry, 2007). In most cases, a population based registry records all the data that relates to all the births to mothers residents with a defined area, and irrespective of where the birth can take place (Rothman & Lash, 2008). A hospital based registry on the other hand is based in several hospitals and it often records the different defects in babies that are born, and this is irrespective of where the mother lives.
Most US states have over the years implemented different birth defects surveillance programs that are needed to monitor as well as disseminate information regarding birth defects. Public health staff as well as researchers has used the data in several ways. The future uses of birth defects registry data are often related to several scientific advances in different areas of research. There are several developing scientific fields that can be able to utilize birth defects data in several ways. For example, the understanding of molecular biology has over the years developed exponentially (Rothman & Lash, 2008). Using the birth defects registry, the investigators can be able to examine the different possible environmentally exposures which are etiologically associated with several birth defects when it comes to the presence of several particular genetic backgrounds. The different discoveries of gene-environment interaction that allow the different researchers to understand the meaning of the different etiological associations. In addition, the way the environmental conditions regulate the gene expression is also of importance as it often helps in the illumination of these different associations that exist.
In conclusion, the public health program often lies in the ways where the data collected are often used to improve the health of the public (Connecticut Birth Defects Registry, 2007). The state birth defects are often no exception and they are often used to exist and improve public health. There is a need to have a program and one has to have clear goals and objectives which drive the way the registry data is used towards the improvement of public health. The data registries are used for prevalence studies, mortality assessments, referral to clinics and services as well as an important program evaluation.
References
Rothman, K. J., Greenland, S., & Lash, T. L. (2008). Modern epidemiology. Philadelphia: Wolters Kluwer Health/Lippincott Williams & Wilkins.
Engels, J. V. (2006). Focus on birth defects research. New York: Nova Science Publishers.
Connecticut Birth Defects Registry. (2007). Birth defects in Connecticut, 2001-2004: A surveillance report on birth defects prevalence. Hartford: Connecticut Dept. of Public Health, Public Health Initiatives Branch, Family Health Section, Connecticut Birth Defects Registry.
