Core Programs

Participant Ascertainment and Clinical Core

The Center for Human Genetics has been a leading force 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 recruited and ascertained participants for numerous genetic studies over the past 20 years. This clinical component, the Participant Ascertainment and Clinical Core (PACC), has as its role to ascertain families and participants using state-of-the-art methods in a manner that demonstrates compassion, respect, and consideration for the individuals and families who participate. In order to fulfill this mission, the PACC is intimately involved in study design to optimize participation and coordinate the involvement of individuals and families throughout the study.

The PACC performs the following essential functions for the Duke CHG and their collaborators:

• Study design — the PACC provides experience-based input to investigators regarding the feasibility of sample size, potential obstacles to ascertainment, and strategies to address these obstacles.
• Preparation of IRB materials including informed consents for genetic studies.
  
• Infrastructure for family and patient ascertainment and biological sample collection. This includes personnel that are highly-skilled in biological sample collection
  
• Clinical tools and procedures selection and development — the PACC has developed a number of tools and methods across studies that maximize phenotype and clinical data collection.
  
• Information exchange including study materials, newsletters, and website education.
  
• Clinical information management in conjunction with the Clinical and Laboratory Informatics Core. The PACC has developed expertise in recruitment and ascertainment of participants for genetic studies. This ranges from development of materials to facilitate participation such as newsletters and web sites to efficient and effective collection of biological samples.
  

The PACC is closely tied to the clinical informatics system and utilizes both Progeny and PEDIGENE^® in an integrated-fashion to manage the tremendous amount of clinical data associated with ongoing genetic studies. The PACC has created ascertainment-tracking methods using Progeny and PEDIGENE^® that increase efficiency and productivity.

The mission of the PACC is to create comprehensive clinical ascertainment methods that optimize participation in studies led by CHG and collaborating DUMC investigators serving as the standard for groups involved in the genetic study of human disease.

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