Archived | Autism Speaks: International Epidemiology Grant Summaries (Winter 2008) | Circa 2008 #NotAnAutisticAlly

2008 Environmental Factors Awards
2008 Basic and Clinical Awards (Winter)
2008 Basic and Clinical Awards (Summer)
2008 Epidemiology Awards
2008 Fellowships
2008 High Risk, High Impact Projects
2008 Pilot Awards (Winter)
2008 Pilot Awards (Summer)
2008 Treatment Awards

Shuaib Kauchali, PhD
University of KwaZulu-Natal, Nelson R Mandela School of Medicine, South Africa; and 
Columbia University, Mailman School of Public Health, New York, NY
Total: $120,000 for 2 years

KwaZulu-Natal (KZN) Autism Study

Little is known about how frequently Autism Spectrum Disorder (ASD) occurs in children in developing countries. The primary aim of the KZN Autism Study is to find out how best to identify children who are suffering from ASD in South Africa.

Without understanding how autism occurs in South Africa, researchers and service providers cannot plan on how to help those children and families suffering with the burden of autism. This is particularly true of indigenous African children with ASD, who often do not have access to services. In addition to the limited information about autism epidemiology and the lack of service availability, South Africa is a region of the world with a very high prevalence of HIV infection. This presents a unique opportunity to study autism in the context of HIV infection and explore the possible link between the two.

The committed health personnel from Inkosi Albert Luthuli Central Hospital (IALCH), Phoenix Assessment and Therapy Center (PATC), and the ASENZE Study, along with personnel from Columbia University and support from the KZN Department of Health, will design and carry out a study that will test how best to identify and assess children with ASD in the Zulu language and culture, explore the prevalence of autism in South Africa, and further explore the hypothesized relationship between autism and HIV infection.

The team will adapt and translate the Ten Questions (TQ), Social Communications Questionnaire (SCQ), and Autism Diagnostic Observation Schedule (ADOS), and use those tools to conduct a pilot epidemiology study that will identify a population of children with autism in South Africa. In addition, this group will work conduct important ethnographic analyses which will explore awareness and understanding of autism and how autism is perceived by the community.

Ultimately, this study will develop the necessary research infrastructure to allow for the identification of children with autism in South Africa, will shed light on the awareness of and service availability for autism in the region, and will provide the groundwork to investigate the possible connection between HIV infection and autism.

Vikram Patel, PhD
London School of Hygiene and Tropical Medicine, London, UK; and 
The Sangath Center, Goa India
Total: $179,542 for 3 years

ARTI: The Autism Research and Training Initiative in India

The goals of the ARTI project are:

1) to develop and evaluate a case-detection methodology for the identification of autism spectrum disorders (ASD) for use with children aged 4 to 7 years;

2) to use this method to estimate the prevalence, determinants and needs of families affected by ASD; and

3) based on these findings to generate a model for a community based intervention for ASD which can be tested in future research.

These goals will be achieved in two phases over three years. Phase 1 will take place during the first year will include translation and adaptation of the Ten Questions (TQ), Social Communications Questionnaire (SCQ), and Autism Diagnostic Observation Schedule (ADOS) screening and diagnostic instruments. The instruments will be translated into the local languages of Konkani and Marathi and will be validated to ensure cultural sensitivity.

Phase 2, which will take place over years 2 and 3, will focus on using these instruments in conducting a pilot epidemiology study to estimate the prevalence of ASD.

The project will be conducted in the state of Goa, on the west coast of India, and will be implemented by Sangath, one of India’s leading child development and mental health research NGOs.

Sangath and the Goan investigators will utilize its strong collaborations with the Ministry of Education and the Ministry of Health, as well as work in partnership with a team of national and international collaborators, drawn from a range of disciplines and sectors including academics, child development practitioners, policy makers and parent groups.

Not only will the current study lead to a better understanding of the scale of the autism problem in India, which can inform government and lead to policy reform, it will help establish the necessary research capacity to develop future epidemiology studies in this region.

Additionally, using standardized epidemiologic methods may allow for cross-country comparisons of autism prevalence; an approach that is not currently possible. The study findings will also be used to advocate for “scaling up” community based intervention for children with ASD in India, which may serve as a model for building service capacity in other low and middle income countries around the world. 

Shaneel Mukerji, MSc, DSE (ASD)
Action for Autism, New Delhi, India
Total: $60,000 for 1 year

A large scale, two phase study to estimate prevalence, and raise awareness, about Autism Spectrum Disorders in India

Despite being the second most populous country in the world, there is a serious dearth of epidemiological research on Autism Spectrum Disorders (ASD) in India.

While estimates suggest that India could have more than 2 million people with ASD, this has never been directly tested. The current project represents a large-scale attempt to estimate the prevalence of ASD in India, by focusing on three major cities of India.

In Year 1, the group proposes to create a central secure online database with phenotypic details and clinical notes of patients between 4-7 years of age, from pediatric outpatient departments of multiple government/charitable and private hospitals in each city. The members of the online database would then be contacted to take part in a screening study using translated versions of the Social Communications Questionnaire (SCQ) and Autism Spectrum Quotient (AQ) in Hindi, Bengali, or Marathi depending on the local language of the city.

Those children who meet the cut-off scores for ASD will then be approached in years 2 and 3 for in-person testing using translated versions of the Autism Diagnostic Observation Schedule (ADOS) and measurement of further socio-cultural variables. These case ascertainment methodology will be used to conduct a pilot epidemiology study that will result in a multi-city prevalence estimate of ASD in India.

In parallel, a structured program to raise autism awareness in the country will be carried out, which will include:

a) organizing yearly workshops for medical professionals, teachers, and parents of children with ASD,

b) making a documentary film,

c) translating existing awareness material into regional languages, and

d) assessing awareness about ASD in the general population, both at the beginning and at the end of our program.

As the first major epidemiological study of autism coupled with a structured autism awareness drive in three major cities of India, as well as being driven by the leading autism advocacy organization in India, Action for Autism, this project has the potential to hugely improve the state of autism research and awareness in India.

Helen Leonard, MBChB, MPH, Telethon Institute for Child Health Research, University of Western Australia | Glenys Dixon, MA, Telethon Institute for Child Health Research, University of Western Australia | Poul Thorsen, MD, PhD, University of Aarhus, Denmark and Emory University, USA | Erik Parner, PhD, University of Aarhus, Denmark | Andre Sourander, MD, Dr Med Sci, Turku University, Finland and Columbia University, USA | Mika Gissler, M Soc Sci, PhD, STAKES National Research and Development Centre for Welfare and Health, Finland and University of Oulu, Finland | Raz Gross, MD, MPH, The Gertner Institute for Epidemiology and Health Policy Research, Israel and Columbia University, USA | Abraham Reichenberg, PhD, Institute of Psychiatry, King’s College, London, England | Camilla Stoltenberg, MD, PhD, Norwegian Institute of Public Health | Cathrine Dahl, MD, Norwegian Institute of Public Health | Pål Surén, MD, MPH, Norwegian Institute of Public Health | Christina Hultman, PhD – Karolinska Institutet | Micheline Bresnahan, PhD, Columbia University | Mady Hornig, MD, Columbia University | Ezra Susser, MD/MPH, Dr. PH, Columbia University | Diana Schendel, PhD, National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention
Total: $1,014,900 for 3 years

International Collaboration for Autism Registry Epidemiology (iCARE)

Population-based disease registry systems are invaluable research resources due to their non-biased coverage, prospective data collection, large size, and length of follow up. The relative rarity of autism, as well as many perinatal conditions, makes use of large multi-national registry-based samples an ideal approach for filling important gaps in our understanding of the relation between perinatal factors and autism.

This proposal builds on the Autism Speaks-CDC International Autism Epidemiology Network Registry Workgroup. The Workgroup established the International Collaboration for Autism Registry Epidemiology (iCARE) and identified relevant registry systems for the proposed investigation in Scandinavia (Denmark, Sweden, Finland and Norway), Australia and Israel.

The goals of the investigation are

1) to establish the necessary infrastructure for multi-registry autism research, including establishing a multi-registry virtual data set approach to analysis and establishing written guidelines for multi-national registry-based research collaboration, and

2) demonstrate the capabilities of the multi-registry approach to elucidate etiological pathways to autism by thoroughly investigating candidate factors for perinatal adversity in relation to autism, beginning with gestational length and fetal growth.

The study will consider variation in diagnostic criteria and trends over time, and based on heretofore unrivaled sample sizes that will permit examination of risk across more finely defined birth weight and gestational age categories; consider effects on risk of fetal size at a given gestational age; control for confounding; and conduct robust stratified analyses considering other important risk factors, such as gender, parental age, and birth multiplicity, and features of autism, such as diagnostic subtype.

The proposed project presets a new scope in epidemiological investigation into risk factors for autism, and will provide the foundation and guidelines for future investigations.

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