The Agony and the Ecstasy: A Tale of Repository Data Analysts

• Activity Number: 112
• Type: Topic Contributed
• Date/Time: Monday, July 30, 2012 : 8:30 AM to 10:20 AM
• Sponsor: Section for Statistical Programmers and Analysts
• Author(s): Norma Pugh*+ and Sylvia Tan
• Companies: RTI International and RTI International
• Keywords: NIDDK ; data repository

Abstract

The National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) Central Repository makes data and biospecimens from NIDDK-funded research available to the broader scientific community. The repository facilitates the testing of new hypotheses without new data or biospecimen collection; informative genetic analyses using well-curated phenotypic data; and the pooling of data across several studies, to increase statistical power and provide a rich source of high-quality data to the scientific community. The management team of the repository is multidisciplinary, and includes consent specialists, database programmers, and web designers. The repository also includes a small team of data analysts, who face a unique set of challenges: performing statistical analyses on submitted clinical datasets to ensure dataset integrity; speaking for study data coordinating centers when responding to user inquiries about the data; and harmonizing datasets across protocols to facilitate larger-scale studies. Here, we discuss these unique challenges and the tremendous value we strive to provide as repository data analysts.