University researchers will use a new $1.6 million federal grant to probe potential social and environmental links to autism, collecting location-specific information from tens of thousands of affected individuals and their families nationwide.
The National Center for Geospatial Medicine, based at the School of Natural Resources and Environment, is funded through the National Institute of Mental Health for the three-year autism spectrum disorder study, which began Oct. 1.
It’s the first effort to improve and expand a large national disease registry by adding self-reported patient information that is geographically linked to relevant social and environmental stressors, said Marie Lynn Miranda, SNRE dean and the project’s principal investigator.
“The success of this project will ride heavily on its technical sophistication and its ability to attract significant numbers of affected families to upload self-reported location information to the data system via a secure website,” Miranda said. “The data need to be collected on a very large scale, minimally in the tens of thousands of subjects.”
The U.S. Centers for Disease Control and Prevention estimates that one in 68 American children has been identified with autism spectrum disorder, a group of developmental disabilities that can cause significant social, communications and behavioral challenges.
The federal government operates the National Database for Autism Research, a repository of clinical, genetic and imaging data from nearly 80,000 research participants with autism spectrum disorder.
Currently, NDAR is unable to link data about individual research participants to their histories of exposure to various social and environmental stressors that might have influenced early brain development, resulting in changes commonly associated with autism spectrum disorder.
The U-M project will help remedy the situation by creating a website to gather voluntarily submitted, confidential information about large numbers of affected individuals and their families.
On the website, participants will complete a questionnaire that asks where the family has lived and requests a basic medical history of the affected child. The team is especially interested in determining where the mother lived from the times of pre-conception through the early years of the child’s life.
The information will be used to link the child to records in the National Database for Autism Research. U-M researchers expect that many families who are not yet enrolled in the NDAR will also complete the questionnaire, thereby expanding the pool of data available to the scientific community.
Geographic information provided by affected individuals and their families will then be tied to social and environmental data gathered from federal, state and local agencies and organizations.
“The key task for this entire effort is to use the geospatial location data as a reference to link participant data to relevant social and environmental data,” Miranda said.
Social and demographic data from the U.S. Census Bureau and the American Community Survey will be used. Environmental data will focus initially on air-quality measurements, including ambient levels of air pollutants.
The U-M team will ask autism researchers to suggest social and environmental exposures that should be included in the database. Information about land use, pesticide use, water sources and quality, geologic formations and nearby industrial facilities could be added, for example. Additional personal information from consenting participants could include questions about diet, immunizations and housing construction materials.
Personal information about the research subjects — including names, addresses and email addresses — will not be shared with the National Institute of Mental Health. Sharing of personal information with outside researchers will require prior consent of the subjects and approval of the research project by U-M’s Institutional Review Board.
The U-M-based National Center for Geospatial Medicine brings to the project wide-ranging expertise on topics such as Geographic Information Systems, geospatial analysis, human subjects research, institutional review board approvals, Certificates of Confidentiality, data security, Internet technologies, and social and environmental datasets relevant to autism research.
The center and SNRE will partner with Information and Technology Services on the project. Omnitec Solutions Inc. operates the National Database for Autism Research and contracted with U-M for the work.
Antonina Tate
How do you become involved in this study?
Kathy Grijalva
We are also interested in knowing how to participate in this study. From the news release, the Web site hasn’t been created yet, so I’m wondering what the timeline for study recruitment is going to be. Thanks.