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Researchers Specialize in Epidemiology of Child Development

Center for Community Inclusion and Disability Studies (CCIDS) researchers Craig Mason and Shihfen Tu are methodologists who specialize in informatics to benefit early childhood development. They are helping Maine develop comprehensive, confidential databases of information about the state’s newborns, including new ways of looking at and linking statistical data, in an effort to ultimately improve the quality of life for those with special needs.

Their research in Maine began in 2001 with ChildLINK, a collaboration between UMaine and the Maine Center for Disease Control and Prevention (Maine CDC) to compile a database to ultimately integrate information from the State of Maine Electronic Birth Certificate, the Newborn Hearing Screen, the Newborn Metabolic Screen, and the Birth Defects Registry (See story: Statewide Database Links At-Risk Babies with Services for Early Intervention).

Maine law established the Maine Birth Defects Program and the Maine Newborn Hearing Program, both in the Maine Bureau of Health, in 1999 and 2000, respectively. After a 2002 pilot of ChildLINK, focusing on newborn hearing screening, the birth defects registry went online the following year. The state implemented universal newborn hearing screening in 2004, automating the newborn hearing screening tracking and mandating reporting requirements for hospitals and healthcare providers.

Licensed clinical social worker and programmer Cecilia Cobo-Lewis, and database administrator Quansheng Song, both of CCIDS, provide the primary training and technical support to healthcare professionals reporting statewide.

“We’d like to see Maine have a seamless, streamlined system for children with special needs so families can be immediately connected to the help they need,” said Mason.

Mason and Tu have particular interest in developing methods for protecting privacy in data collection. The key is in protecting privacy while making the information usable.

“That’s part of the role universities play in facilitating this work,” said Mason. “It’s a collaboration among universities, and state and private agencies that has proved valuable in a number of states.”

Using the databases, state health officials can track and plan services, and enhance opportunities for applied state public health surveying and research. ChildLINK can generate on-demand individualized demographics reports statewide or by hospital for officials with the highest access privileges. Even family-level studies are possible, which are particularly important in research on genetic patterns or environmental risks. With Institutional Review Board (IRB) approval and Maine CDC review, researchers will be able to access anonymous, aggregate information for conducting policy-relevant public health studies.

Mason and Tu are members of a national consortium of researchers specializing in child developmental epidemiology using public health databases. The hybridization—bridging public health epidemiology and traditional child development—has led to the creation of the Journal of Developmental Epidemiology. Mason is an associate editor; Tu serves on the editorial board of the journal, to be published online by BioMed Central.

“It is work on population-level data using methodology to identify early childhood risk factors to predict social, developmental and educational outcomes,” says Tu.

— Margaret Nagle
Excerpted with permission
from UMaine Today magazine

CENTERPOINT: The Newsletter of the University of Maine
Center for Community Inclusion and Disability Studies,
Maine’s University Center for Excellence in Developmental Disabilities
Education, Research, and Service