Informatics Research Seminar: The Duke Breast Data Repository (DBDR): Adventures in Creating a Disease-based Quality and Research Data Infrastructure

August 27 @ 4:00 – 5:00 pm


Speaker:  Shelley Hwang, MD, MPH
Presented from: Duke University

Broadcast link: Seminar


The most trusted source of clinical research data is often trapped within unstructured text documents generated as part of clinic flow. Capturing this data for clinical use and research is challenging and requires tools such as NLP which has known limitations. However, when the text is stored in a template format as is often the case in clinical reports, the goal to free the text is achievable and makes trapped data available for evaluation and analysis.

The Duke Breast Data Repository (DBDR) project team was chartered with building a Breast Cancer Data Repository of common data elements using trusted electronic sources. The team represents a highly integrated collaboration between content experts, end-users and data analysts. The focus of this project is to develop a disease-specific data mart for all stages of breast cancer which includes diagnosis, pathology, treatment and outcome data and coordinates 5 different electronic data sources. The project deliverable is a virtual breast data repository with subject-specific tables that contain a well-defined cohort and a Data Dictionary based on NCI Common Data Elements that clarifies and defines the meaning and permissible values of each data element. This methodology can be used to create a data set for many other report and cancer types and is a prototype of how similar goals can be achieved across disease groups.


Shelley Hwang, MD, MPH is Chief of the Division of Breast Surgery at Duke University, where she leads translational and outcomes-based research activities in early stage and in situ breast cancer. Her research interests include establishing feasibility for a less invasive treatment for preinvasive breast cancers, and identifying tumor- and stroma-associated determinants of cancer progression which may be targeted for breast cancer prevention. She is the PI of a national cooperative group study (CALGB 40903) evaluating the role of systemic treatment for low risk DCIS. Her research has been supported by the NIH, the Susan G. Komen Foundation, the Breast Cancer Research Fund, and The American Cancer Society.