The Division of Patient and Family Ascertainment (PFAD) at the John P. Hussman Institute for Human Genomics provides operational guidance for all clinical personnel and supports select clinical operations.
Working with HIHG Principal Investigators (PIs), the PFAD assists in the hiring of clinical personnel and provides basic training for all newly hired individuals. Clinical personnel can utilize the PFAD and its staff to assist in activities related to ascertainment including coordination of phlebotomy training, obtaining sampling and promotional materials, and continuing education. In addition, the PFAD supports the recruitment of patients and families into various studies by assisting with community outreach.
The PFAD also monitors clinical regulatory activities. The PFAD assists PIs and study coordinators in developing and maintaining IRB related materials for new and ongoing studies, and provides study quality assurance. For those studies with no designated study coordinator, the PFAD creates and coordinates the necessary IRB materials. Lastly, PFAD assists with implementing NIH study mandates, such as Certificate of Confidentiality applications and coordination of data transfer to national data repositories (e.g., RUCDR, dbGaP).