Draft:The Penn Medicine BioBank

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The Penn Medicine BioBank

About:

The Penn Medicine BioBank (PMBB) is an electronic health record (EHR)-linked biobank at the University of Pennsylvania (Penn Medicine), founded November 6, 2008. The Penn Medicine BioBank (PMBB) integrates a wide range of health-related data—including diagnosis codes, lab measurements, imaging data, and lifestyle factors—with genomic and biomarker information to advance research and translational science. It has enrolled over 260,000 participants, with about 30% identifying as non-European ancestry, making it one of the most diverse medical biobanks. Participants contribute an average of seven years of electronic health record data and consent to recontact for further studies. The significant representation of African-American participants highlights the importance of diversity in genetic research. The PMBB advocates for a medical biobank consortium to enhance collaboration, replicate findings, and improve the power of studies on rare phenotypes and variants, ultimately supporting precision medicine. Some other biobanks include UK BioBank, Euro BioBank, and All of Us.

History and Development:

In 2008, Penn Medicine recognized the critical need for a substantial collection of human biospecimens for translational research and established an Institutional Review Board (IRB) protocol. This initiative focused on obtaining informed consent from patients and collecting blood samples for genomic and biomarker studies. By 2013, following a strategic evaluation that emphasized the need for a broader biobank resource, the Penn Medicine BioBank (PMBB) was officially launched under the Institute of Translational Medicine and Therapeutics (ITMAT). This ensured that the biobank was integrated with infrastructure for clinical and translational research and precision medicine.

The PMBB operates under a comprehensive institutional protocol so that any adult Penn Medicine patient (aged 18 or older) is eligible to participate, with the only exclusion being those unable to provide informed consent. Key components of the PMBB consent process include: (1) provision of a blood sample for biobanking and broad research use, including genomic data, as well as permission to store any residual tissues collected during clinical care; (2) authorization to access electronic health record (EHR) data for research purposes; and (3) consent to recontact participants for potential future studies or to communicate research findings.

Recruitment:

Initially, the PMBB enrolled participants through in-person meetings with clinical research coordinators (CRCs) in outpatient settings, focusing on areas where blood samples were collected, such as phlebotomy labs and cardiac catheterization units. However, following the onset of the COVID-19 pandemic in August 2020, the PMBB shifted to remote recruitment. This transition involved implementing an electronic consent and enrollment process via REDCap, a secure platform for managing online surveys and databases.

Additionally, a consent process using the electronic health record (EHR) system, PennChart (Epic), was established. Initially conducted in person at check-in, this process was expanded to allow patients to consent during pre-check-in through the myPennMedicine online portal. Patients scheduled for outpatient visits at participating clinics receive the PMBB consent form during their electronic pre-visit check-in, with an option to complete it online.

For Researchers: Access to the Penn Medicine BioBank:

Full-time faculty, adjunct faculty, staff, and trainees at the University of Pennsylvania can apply to access PMBB data and samples if they have approved IRB protocols.