. Author manuscript; available in PMC: 2015 Mar 10.

Published in final edited form as: Am J Med Genet C Semin Med Genet. 2014 Mar 10;0(1):56–67. doi: 10.1002/ajmg.c.31390

TABLE IV.

Research Enrollment and Genetic Data Storage

Patients approached for research enrollment	394
Patients declined to participate	37 (9%)
Patients consented for research enrollment	357 (91%)
Electronic consent (RPMS)	346
Paper consent	11
Patients consenting to additional research questions
Notification of new pharmacogenetic test result reported in EHR	328/357 (92%)
Notification of incidental pharmacogenetic findings that are later learned to affect disease risk	342/357 (96%)
Re-contact for other research	253/357 (71%)
Electronic consent (RPMS) performance
Number of patients experiencing technical issues with RPMS consent	5
Number of documented RPMS consent downtimes	3 (avg 3.5 hr each)
Storage of genetic data
Number of DNA samples stored in biorepository	341/357 (96%)
Number of patients with genetic data stored in IDR	322/357 (90%)

RPMS, Research Permissions Management System; EHR, electronic health record; IDR, Integrated Data Repository.