The mission of the SACC is to utilize and improve upon comprehensive clinical ascertainment methods that optimize participation in research studies conducted by the CHG and the dissemination of these methods to collaborating investigators.
The Duke Center for Human Genetics continues to be a leader in scientific efforts to understand the genetic and environmental influences on human disease. As part of this endeavor, the Center has a well-established multidisciplinary clinical component that has successfully ascertained participants for numerous genetic studies over the past 20 years. The Subject Ascertainment and Clinical Core (SACC), maintains a goal of ascertaining research families and individuals in a manner that demonstrates compassion, respect, consideration and confidentiality. In order to enhance research progress, the SACC is intimately involved in study design to maximize and facilitate the participation of individuals as expeditiously as possible.
The SACC performs the following essential functions for the Duke CHG and its collaborators:
- Study design
- Provides experience-based input to investigators regarding the feasibility of sample size, potential obstacles to ascertainment, and strategies to address these obstacles.
- Aids in the submission of IRB protocols including assistance with informed consents, research abstracts, and research summaries.
- Utilization of CHG clinical personnel to train new study team members in ascertainment methodology and biological sample collection.
- Clinical tools and procedures
- Utilizes a number of tools and methods across studies that maximizes clinical data collection.
- Provides suggestions for disseminating study specific information using study brochures, newsletters, and web sites and other types of media systems.
- Clinical information management
- The SACC is closely tied to the Clinical and Laboratory Informatics Core and utilizes both the Progeny and PEDIGENE® databases in an integrated-fashion to manage and safely store the collected clinical data for future analyses. The SACC has also created ascertainment-tracking methods using both Progeny and PEDIGENE® to increase efficiency and productivity of the research effort.