Archived | Autism Speaks: Autism Epidemiology Network | Circa 2007 #NotAnAutisticAlly


Autism Speaks and the CDC have established an international information sharing network to study the epidemiology of autism

Our Mission


Autism Speaks and the Centers for Disease Control and Prevention (CDC) are co-sponsoring an initiative to explore possible scientific opportunities in an international collaborative effort in autism epidemiology.

The long range objectives of this project are to

(1) Develop a network for exchange and collaboration of epidemiology activities across countries;

(2) Examine successful international collaborative models applied to other health conditions and identify common features that might facilitate autism surveillance and research; and

(3) Identify the unique role that epidemiology can play in understanding the causes of autism; particularly in comparisons across diverse genetic and cultural settings. 

We invite researchers who are actively engaged in epidemiologic projects to collaborate with both Autism Speaks/CDC and each other to help address issues that will lead to advancing our understanding of the epidemiology of autism. Further, we are establishing workgroups that focus on the epidemiology of autism based on different types of ascertainment approaches. 

The three workgroups are: 

Registry systems
Records or service-based approach
Developing/low service countries

We encourage you to read each of these approaches to see which best fits your current or proposed research method and population under study and to become active with us by joining one or more of these workgroups. If you decide you would like to participate in our ongoing collaboration you can join the Autism Epidemiology list-serv for periodic updates.

Autism Speaks and the CDC meet monthly by telephone to discuss progress of the initiative and upcoming possibilities and activities. The minutes from these monthly conferences can be found here:

Minutes from the epidemiology subcommittee monthly teleconference calls, September 2006 through December 2006

Minutes from the epidemiology subcommittee monthly teleconference calls, January 2007 through June 2007



The International Autism Epidemiology Network holds its annual meeting at IMFAR in London


May 14, 2008 marked the 4th annual meeting of the IAEN.  In attendance were over 70 investigators representing nearly 30 countries across 6 continents.  The meeting featured an update of recent network activity and next steps, a panel discussion on successful models for international collaborative research in epidemiology, and concluded with guest speaker Dr. Geraldine Dawson, Chief Science Officer of Autism Speaks.”

 Summary of the May 2, 2007 pre-IMFAR Meeting

The International Autism Epidemiology of Autism Network is proceeding with the recommendations from the May 2nd meeting in Seattle Washington. To learn more about the background of this initiative as well as the specific approaches and projects planned, please see a presentation prepared by Dr. Marshalyn Yeargin-Allsopp, M.D. 


Our Mission

Autism Speaks and the Centers for Disease Control and Prevention (CDC) are co-sponsoring an initiative to explore possible scientific opportunities in an international collaborative effort in autism epidemiology.

The long range objectives of this project are to

(1) Develop a network for exchange and collaboration of epidemiology activities across countries;

(2) Examine successful international collaborative models applied to other health conditions and identify common features that might facilitate autism surveillance and research; and

(3) Identify the unique role that epidemiology can play in understanding the causes of autism; particularly in comparisons across diverse genetic and cultural settings. 


Over the past decade, the prevalence of children identified with autism and autism spectrum disorders (ASDs) has increased in developing countries. In the United States , the prevalence of autism spectrum disorders is now estimated at 1 in 150 children, with some states showing a prevalence as high as 1 in 94.  However, many unanswered questions exist about what is the prevalence of autism in different communities, especially in developing countries, trends in prevalence over time, and what is causing the increase in prevalence.

Determining and monitoring the prevalence over time is challenging, but important given the concerns about increased prevalence. In addition to examining prevalence and trends over time, epidemiologic research is needed to help develop standardized case definitions, help define the features of people with an ASD on a population level, address questions regarding risk factors and causes, and evaluate identification and intervention patterns for people with ASD. Some questions that can be answered using epidemiologic methods, for example include, are some subgroups of the population more affected than others? How do specific genes and the environment interact in terms of causation? Are there public health programs that have unintended consequences, e.g., vaccines? vitamins?.

Autism Speaks and the Centers for Disease Control and Prevention (CDC) are co-sponsoring an initiative to explore possible scientific opportunities in an international collaborative effort in autism epidemiology. The long range objectives of this project are to (1) Develop a network for exchange and collaboration of epidemiology activities across countries; (2) Examine successful international collaborative models applied to other health conditions and identify common features that might facilitate autism surveillance and research; and (3) Identify the unique role that epidemiology can play in understanding the causes of autism; particularly in comparisons across diverse genetic and cultural settings.

Registry systems

Records or service-based approach

Developing/low service countries

We encourage you to read each of these approaches to see which best fits your current or proposed research method and population under study and to become active with us by joining one or more of these workgroups. If you decide you would like to participate in our ongoing collaboration you can join the Autism Epidemiology list-serv for periodic updates.



Explore Autistic History


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