Core Resources : Patient and Family Ascertainment Core
Patient and Family Ascertainment Core
Core Leader: Ricardo Martinez rmartinez1@med.miami.edu
The Patient and Family Ascertainment Core (PFAC) at the John P. Hussman Institute for Human Genomics serves as the center for clinical operations and provides operational guidance and support for all clinical personnel. Specifically, the PFAC trains all newly hired personnel in basic ascertainment and regulatory practices and use of ascertainment tools including Progeny, Pedigene, and CHIMERA as well as policies and procedures. The Ascertainment Core assists investigators in the hiring of clinical personnel for specific studies. This includes monitoring study needs, anticipating new hires, recruiting and interviewing candidates, and filling positions quickly to avoid gaps in coverage. In addition, all clinical personnel can utilize the core and its personnel to assist in activities related to ascertainment including coordination of phlebotomy training, obtaining sampling and promotional materials, and continuing education.
The PFAC monitors clinical regulatory activities including IRB preparation, Certificate of Confidentiality applications, continuing reports, and quality assurance. The core oversees the writing and coordinating of IRB materials by study coordinators, assisting when necessary. If there is not a designated study coordinator, the PFAC will create and coordinate the necessary IRB materials. The core will train study coordinators to create, adapt, and coordinate necessary IRB materials as well as train them on UM IRB infrastructure and logistics, including e-prost.
The PFAC also coordinates recruitment and enrollment of adult and pediatric study controls. Overall, the Core enhances recruitment of patient and families into the various studies through community outreach which include focus groups, community advisory boards, and creation of culturally sensitive strategies for different racial and ethnic populations.
The core can aid investigators and clinical staff in the development and coordination of new individual and family based genetic studies. Consultation is available to determine cost, time, personnel needs, sampling needs, and IRB requirements.