The Duke Center for Human Genetics is an international leader in the study of inherited disorders. Our faculty and staff investigate genetic and environmental influences on human disease in a uniquely integrated research setting. Understanding the causes of human illness allows scientists and physicians to develop better treatments. Genetic research may uncover ways to slow the progression of a disease or prevent symptoms from ever appearing. Therefore, our long-term goal is the incorporation of genetic research findings into the diagnosis, treatment, and prevention of disease.
Role: Business Manager, Duke Center for Human Genetics
"PEDIGENE®, an internationally acclaimed computer data management system designed and licensed by Duke, uses multi-layered security levels to ensure participant confidentiality through all phases of a family and population study including:
- Family history and other vital statistics
- Clinical diagnostic information
- Environmental risk factor information
- Sample collection and storage
- Genetic marker and genotype information following DNA typing
- Catalogues of analytical results
This reliable system greatly facilitates data analysis, easily handling the vast amount of information generated during each genetic study. PEDIGENE® has already played a key role in localizing or mapping more than 50 genes involved in diseases. Clinical information is available only to the PIs and specific personnel designated by them, with access strictly prohibited by non-critical personnel or CHG investigators in other studies.
PEDIGENE® has been adapted to house massive and detailed information: clinical information, marker information and genotypes for a large number of genetic markers on samples of thousands of families and tens of thousands of individuals. The PEDIGENE® system stores family history information on over 500,000 individuals and 6,000 families. Information is stored on nearly 100,000 DNA samples and over 6.5 million genotypes. In the course of collaborative studies we have developed methods for secure access to our database and software for collaborators outside the Duke CHG. Thus, we have experience in distributing data to and accepting data from a wide variety of data types, sources, and formats. Collaborators can access PEDIGENE® from their local research facilities."