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International Autism Epidemiology Network
The International Autism Epidemiology Network (IAEN) is an international collaboration between Autism Speaks and the CDC as an effort to examine autism epidemiology. The network seeks out effective ways to conduct epidemiological studies on autism spectrum disorders throughout the world. Epidemiology is defined as “the study of distributions (patterns) and determinants (causes) of disease in populations, and the application of this study to managing health problems.”1 The network can make connections about the frequency of autism spectrum disorder (ASD) in different populations by monitoring the incidence and prevalence of the disorder. Ultimately, the goal is to apply this data to understand how to take “control of the disease through prevention and treatment, resulting in the preservation of public health.”1
The Purpose of Epidemiology
The International Autism Epidemiology Network welcomes researchers engaged in epidemiologic projects to collaborate with the CDC and Autism Speaks in an effort to advance the understanding of the epidemiology of autism.2 The first long range objective of the IAEN is to create a network for the exchange and collaboration of epidemiology activities across countries. To achieve this goal, researchers are encouraged to join the Autism Epidemiology list-serv and assign themselves to an appropriate established workgroup based on their current or proposed research methods. According to the website of the International Autism Epidemiology Network2 three workgroups, which center on the epidemiology of autism based on different types of ascertainment approaches, are as follows:
- Entitled registry systems
- Records of service-approach
- Developing/low service countries
The hope is that epidemiology research will spread awareness of autism spectrum disorders, which in turn can “help government agencies develop informed policies regarding care of individuals and families with autism and other developmental disorders within their country.”3
The second aim of the IAEN is to examine successful international collaborative models applied to other health conditions and identify common features that might facilitate autism surveillance and research.4 The scope of this study on the causes of autism is unprecedented, but past global studies using international registries to monitor diseases like malaria, tuberculosis, and HIV may provide insights into which methods are most effective in facilitating surveillance and research.5 The final objective of the IAEN is to recognize “the unique role that epidemiology can play in understanding the causes of autism; particularly in comparisons across diverse genetic and cultural settings.”4 A promising IAEN subgroup, known as iCARE, utilizes combined national registries from different countries to conduct an unprecedented global study on specific factors that influence the development of ASD.
The iCARE Project
The International Collaboration for Autism Registry Epidemiology (iCARE) collects national health registry data from six international sites including Australia, Denmark, Finland, Norway, Sweden, and Israel.7 The national registries can collect an immense amount of data on individuals for long periods of time, often from birth through adulthood. The records from these registries will be combined into a massive database to help answer the questions surrounding autism, such as how common is autism, how do genetic and environmental factors interact in autism, which therapies are effective, and how autism prevalence has changed over time.1 The information gathered from these databases will “make previously impossible studies on the causes of autism possible.”3
The gathering of this data is simply the first stage of an iCARE study entitled Multi-Registry Analysis of Pre- and Perinatal Risk Factors for Autism. The second aim of the study is to investigate the role of potential pre- and perinatal risk factors for the development of autism.6 The iCARE team will examine “the relationship between gestational length (the amount of time spent in gestation) and fetal growth (birth weight) and the risk for autism.”6 There is some research to suggest that these factors play a role in the developmental of neurological and psychiatric problems, however the restrictions of these studies (mainly small sample size) caused the results to be inconsistent.
The use of the extensive national health registry data will not be limited to this study, but is designed to have a lasting impact on the field. The final aim of the iCARE project is to “provide a valuable resource for future research as it lays the groundwork for the study of additional risk factors potentially associated with autism.”6 According to Dr. Diana Schendel, project coordinator of iCARE, “the research may highlight factors that really should be studied in greater depth, and the research may reveal that certain factors are not involved. Future work can then focus on more promising clues as to the causes of autism.”6
The results of the Multi-Registry Analysis of Pre- and Perinatal Risk Factors for Autism are forthcoming.
Challenges of the International Autism Epidemiology Network
The iCARE project began as a subgroup of the International Autism Epidemiology Network. To have success, the iCARE project, and similar projects aiming to establish epidemiology activities across various countries, must overcome specific challenges. The expansive reach of the International Autism Epidemiology Network presents several challenges in terms of cultural and economic feasibility. It is common knowledge that social norms vary throughout different cultures. This presents a problem as ASD is presently diagnosed behaviorally, based generally on deficits in social interaction and communication.1 This means autism can potentially be diagnosed in different ways from one country to another. For example, “limited or absence of eye contact, an autism “red flag” in some western cultures, may be seen as a sign of respect rather than a deficit in some Asian cultures.”1 Fortunately, there are some social cues that are universal throughout all cultures, especially for infants, such as response to your name being called. Additionally, epidemiological studies can be hindered by the fact that in some countries there are insufficient numbers of qualified clinical and research professionals available to conduct the epidemiology studies. The overall scope of this project presents its own set of challenges. The project requires a vast amount teamwork, funding, and cutting-edge technology. Autism Speak, Inc. has donated $2.5 million in research funding since the project’s inception.7
The scientific community awaits the results of the initial iCARE study, but the data collected is an invaluable resource for future autism studies. Researchers will be able to conduct studies on a global scale as a result of standardizing epidemiological research methods internationally. This means the findings from the iCARE and subsequent studies will be able to compare the prevalence and risk of developing autism across countries. Global epidemiology studies can have a supreme impact on the economy, government, and society as a whole. These epidemiologic findings “have the potential to influence government, public health agency, and medical organization policies and practices, thus benefiting previously underserved communities.”3