Newborn Screening Follow-up Data Integration Collaborative (NBSDC) is the Emory University based project that relies on the usage of the Semantic Web technologies and ontologies to provide support, tools and services to clinicians and researchers in the field of newborn screening long-term follow-up (LTFU). It is envisioned as the integrated framework for collecting, integrating, and sharing de-identified patient LTFU data. The ultimate goal of the NBSDC is to make contribution the research community that is dedicated to the advancement of the LTFU translational research and meaningful use aiming to the improvement of patient treatment, outcomes and quality of life.
NBSDC is the first project in the LFTU field that relies on applying the Semantic Web technologies and ontologies, intended to serve as a useful tool for the meaningful use of collected electronic patient data and new knowledge generation aiming to help to clinicians and researchers in the field of newborn screening follow-up.
NBSDC is envisioned to comprise several major project components:
The NBSDC Data Base (NBSDCdb) to store the data sets of de-indentified patient data collected during regular LTFU clinical practice and the research studies.
The Ontology for Newborn Screening Follow-up and Translational Research (ONSTR) built to serve as the source of knowledge representations of the LTFU domain needed to support prospective Semantic Web tools and applications put in service to the community of LTFU researchers and clinicians.
Tools and applications (NBSDCtools) that will use Semantic Web technologies and together with the ONSTR be able to aid LTFU researchers and clinicians in their everyday efforts of providing optimal and personalized care to patients with one of inherited or congenital diseases identified and diagnosed through the Newborn Screening System.
Diagram below shows is a simple illustration of NBSDC workflow.
NBSDC is currently under active development. More details about the project workflow, project development efforts and results will be posted at this website a later date.