The success of research studies is critically dependent on the collection, generation, management, analysis, and interpretation of large, varied, and detailed data. These data typically include demographic and family history data, numerous different clinical measures, biomarker, imaging, and genetic data, as well as longitudinal follow-up data.
These data must be tracked, quality controlled, and stored in a secure manner that still allows quick and easy access for analysis and interpretation. The Data Management and Statistics Core (DMSC) is designed to support all of these activities for all CADRC researchers through a secure and comprehensive data management system. Further, the DMSC provides expertise in study design as well as in the analysis and interpretation of study results.
This core provides:
- A Secure and comprehensive Data Acquisition and Management Environment
- This team is responsible for maintaining a secure research environment (SRE) with controlled access. The SRE is governed by a risk-assessment program that includes implementation of controls that meet recommendations or requirements of regulatory and information security standards (including HIPAA security, FISMA, and SANS/ISO recommendations).
- Read more about the secure research environment and data management capabilities here.
- Interactivity with Other Cores, Investigators, and External Databases:
- The DMSC enables the efficient transfer of information across the center’s individual units and promotes interactivity within and beyond the center. We work across the multiple collaborating institutions that have parallel but institution-specific data capture and security approaches.
- Because the CADRC is part of a national network of ADRCs, we are also responsible for sharing appropriate CADRC data with the National Alzheimer’s Coordinating Center (NACC) at regular intervals through secure protocols. This enables researchers across the country to access the coded data for their studies to understand AD and develop therapeutics.
- Biostatistical and Data Analysis Support:
- The DMSC can consult with CADRC and other AD researchers about research study design, as well as provide biostatistical and data analysis support for ongoing research projects. The team offers expertise in the design of clinical trials, data modeling, data mining, and genomic analysis.
Dr. Jonathan L. Haines, Data Management and Statistics Core Leader
Dr. Curtis Tatsuoka, DMSC Co-Investigator
Dr. Hao Harry Feng, DMSC Co-Investigator
Dr. Audrey Lynn, Project Manager
Robert (Bob) Lanese, Data Architect
Dr. Paola Saroufim, Database Programmer
Dr. Sunah Song, Database Programmer
Mark Beno, Strategic Planning Director