The Epidemiology of Child Development
to Connections for Newborns in Need-]
Shihfen Tu & Craig Mason
University of Maine researchers Craig
Mason and Shihfen Tu are methodologists who specialize in informatics to
benefit early childhood development. They are helping Maine to develop
comprehensive, confidential databases of information on 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
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 Defect
Maine law established the Maine Birth Defects Program and the Maine
Newborn Hearing Program, both in what was then 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
Licensed clinical social worker and programmer Cecilia Cobo-Lewis, and
database administrator Quansheng Song 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," says 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,"
says 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
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 and Maine CDC approval,
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
"It is work on population-level data using methodology to identify early
childhood risk factors to predict social, developmental and educational
outcomes," says Tu.