Autism Speaks Announces Funding for Epidemiology Research
$1.5M in Funding Over the Next Three Years for Five New International Projects to Study Autism Prevalence and Risk Factors
$1.5M in Funding Over the Next Three Years for Five New International Projects to Study Autism Prevalence and Risk Factors
Autism Speaks has announced its commitment of $1.5 million to study autism prevalence and risk factors. One of the few ways to know if autism rates are truly increasing and what factors might account for this increase is to carefully survey different areas of world for their rates of autism. Although simple in concept, unfortunately up until now this has not been possible due to major differences across the world in how autism is diagnosed. To solve this problem and achieve an accurate assessment of autism prevalence around the globe, in 2008 Autism Speaks launched specially-designed funding mechanisms to bring a focus on international autism epidemiology research.
One of the funding mechanisms was designed to support epidemiologic research in developing (low and middle income) countries to translate autism screening and diagnostic instruments, specifically the SCQ and ADOS, and utilize these instruments in a pilot, population-based epidemiology study. By standardizing the research methods, or in other words, by having each team of investigators use the same screening and diagnostic instruments, researchers can ensure that the findings of these studies will be comparable across countries. The second funding mechanism was designed to lay the groundwork for ongoing surveillance of autism spectrum disorders (ASD) using a multiple-source, records-based system in territories outside of the U.S. similar to what has been used by the CDC to estimate autism prevalence in the U.S. Overall, 15 epidemiology applications were submitted, of which five were recommended for funding including four from the developing-countries mechanism. Additionally, Autism Speaks funded a proposal from a sub-group of its International Autism Epidemiology Network focusing on registry-based epidemiology. This project aims to uniquely study autism prevalence and potential risk factors using a large, combined database, or "registry of registries," with information from six international sites.
From the developing-countries mechanism, a project in South Africa, and two studies in India were selected for funding. In South Africa, the KwaZulu-Natal (KZN) Autism Study, led by Shuaib Kauchali, Ph.D. of the University of KwaZulu-Natal and Columbia University, will 1) test how best to identify and assess children with ASD in the Zulu language and culture; 2) explore the prevalence of autism in South Africa; and 3) further explore the hypothesized relationship between autism and HIV infection. In addition, the team proposes to conduct an ethnographic study which will explore awareness, understanding and perception of autism in the community.
In India, two studies are being funded to translate and make culturally sensitive the gold-standard screening and diagnostic instruments used here in the U.S. into four major Indian languages spoken by a combined 675 million people worldwide. In Goa, Vikram Patel, Ph.D. of the Sangath Center and the London School of Hygiene and Tropical Medicine, is leading a study entitled ARTI: The Autism Research & Training Initiative in India. This proposal aims to 1) develop and evaluate an ASD case ascertainment methodology for 4-7 year old children in Goa, India by translating and validating screening and diagnostic into the local languages Konkani and Marathi; 2) to use this case ascertainment approach in conducting a pilot epidemiology study to estimate autism prevalence and the needs of families; and 3) develop a model of community-based intervention based on the findings. The research is to take place through the Sangath Center, recipient of the MacArthur Award for Creative and Effective Institutions. A bit further north in Delhi, India, Shaneel Mukerji, MSc, DSE of India's largest and most successful advocacy organization Action for Autism, leads a project called Creating Connections. Through the funding of this proposal, the investigators will translate and adapt the Modified TQ, SCQ, and ADOS into the two most commonly spoken languages in India: Hindi and Bengali.
Lastly, the multi-national multi-registry project entitled the International Collaboration for Registry Based Epidemiology (iCARE) seeks to link multiple population-based health registries from six international sites (Norway, Denmark, Finland, Sweden, Australia and Israel). The data from these registries will be compiled into a virtual database which the research team will use to investigate candidate pre- and peri-natal environmental factors, such as birth weight and gestational age, in relation to autism. A database of this size also provides an invaluable research for future studies of potential environmental risk factors that were previously unfeasible due to small sample sizes. The research team from this study includes 16 investigators from the above listed registry sites, plus Columbia University and the CDC in the U.S.
View the complete list of abstracts selected for funding here.
One of the funding mechanisms was designed to support epidemiologic research in developing (low and middle income) countries to translate autism screening and diagnostic instruments, specifically the SCQ and ADOS, and utilize these instruments in a pilot, population-based epidemiology study. By standardizing the research methods, or in other words, by having each team of investigators use the same screening and diagnostic instruments, researchers can ensure that the findings of these studies will be comparable across countries. The second funding mechanism was designed to lay the groundwork for ongoing surveillance of autism spectrum disorders (ASD) using a multiple-source, records-based system in territories outside of the U.S. similar to what has been used by the CDC to estimate autism prevalence in the U.S. Overall, 15 epidemiology applications were submitted, of which five were recommended for funding including four from the developing-countries mechanism. Additionally, Autism Speaks funded a proposal from a sub-group of its International Autism Epidemiology Network focusing on registry-based epidemiology. This project aims to uniquely study autism prevalence and potential risk factors using a large, combined database, or "registry of registries," with information from six international sites.
From the developing-countries mechanism, a project in South Africa, and two studies in India were selected for funding. In South Africa, the KwaZulu-Natal (KZN) Autism Study, led by Shuaib Kauchali, Ph.D. of the University of KwaZulu-Natal and Columbia University, will 1) test how best to identify and assess children with ASD in the Zulu language and culture; 2) explore the prevalence of autism in South Africa; and 3) further explore the hypothesized relationship between autism and HIV infection. In addition, the team proposes to conduct an ethnographic study which will explore awareness, understanding and perception of autism in the community.
In India, two studies are being funded to translate and make culturally sensitive the gold-standard screening and diagnostic instruments used here in the U.S. into four major Indian languages spoken by a combined 675 million people worldwide. In Goa, Vikram Patel, Ph.D. of the Sangath Center and the London School of Hygiene and Tropical Medicine, is leading a study entitled ARTI: The Autism Research & Training Initiative in India. This proposal aims to 1) develop and evaluate an ASD case ascertainment methodology for 4-7 year old children in Goa, India by translating and validating screening and diagnostic into the local languages Konkani and Marathi; 2) to use this case ascertainment approach in conducting a pilot epidemiology study to estimate autism prevalence and the needs of families; and 3) develop a model of community-based intervention based on the findings. The research is to take place through the Sangath Center, recipient of the MacArthur Award for Creative and Effective Institutions. A bit further north in Delhi, India, Shaneel Mukerji, MSc, DSE of India's largest and most successful advocacy organization Action for Autism, leads a project called Creating Connections. Through the funding of this proposal, the investigators will translate and adapt the Modified TQ, SCQ, and ADOS into the two most commonly spoken languages in India: Hindi and Bengali.
Lastly, the multi-national multi-registry project entitled the International Collaboration for Registry Based Epidemiology (iCARE) seeks to link multiple population-based health registries from six international sites (Norway, Denmark, Finland, Sweden, Australia and Israel). The data from these registries will be compiled into a virtual database which the research team will use to investigate candidate pre- and peri-natal environmental factors, such as birth weight and gestational age, in relation to autism. A database of this size also provides an invaluable research for future studies of potential environmental risk factors that were previously unfeasible due to small sample sizes. The research team from this study includes 16 investigators from the above listed registry sites, plus Columbia University and the CDC in the U.S.
View the complete list of abstracts selected for funding here.
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