NEW YORK (GenomeWeb News) – The Children's Hospital of Philadelphia will use a $1.8 million award to create a repository to store clinical records and data on patients who have tested positive for disorders in newborn screening tests, CHOP said on Tuesday.
The goal of the Long-Term Follow-Up Data Collection Tool is to expand the collection of data linked to newborn screening tests and, while protecting patient identities, enable researchers to study the data to develop new ways to screen for and treat diseases.
These secure, centralized records will continue to receive the results of follow-up tests, diseases, complications, medications, and treatments over the years, creating a resource involving many patients and tests over a long period. The resource is being created by CHOP's Center for Biomedical Informatics.
The goal of the centralized data resource is to enable researchers to look for patterns in the data that generally would not be discernible if they only looked at the cases coming from one research center.
"Currently, newborn screening programs are primarily limited to a short-term focus," CBMi Director Peter White, who is leading the project, said in a statement. "The programs screen for disorders in which early intervention is possible. If we can broaden the data capture to follow up children over a longer term, we can tap the potential to develop new medical tests and interventions for diseases that are not currently detectable or treatable."
Funding for the project came from the American College of Medical Genetics, which provided the subcontract award from an award it received from the Newborn Screening Translational Research Network, which is funded by the Eunice Kennedy Shriver National Institute of Child Health and Human Development.