Abstract
Increasingly, biobanks are being developed to support organized collections of biological specimens and associated clinical information on broadly consented, diverse patient populations. We describe the implementation of a pediatric biobank, comprised of a fully-informed patient cohort linking specimens to phenotypic data derived from electronic health records (EHR). The Biobank was launched after multiple stakeholders’ input and implemented initially in a pilot phase before hospital-wide expansion in 2016. In-person informed consent is obtained from all participants enrolling in the Biobank and provides permission to: (1) access EHR data for research; (2) collect and use residual specimens produced as by-products of routine care; and (3) share de-identified data and specimens outside of the institution. Participants are recruited throughout the hospital, across diverse clinical settings. We have enrolled 4900 patients to date, and 41% of these have an associated blood sample for DNA processing. Current efforts are focused on aligning the Biobank with other ongoing research efforts at our institution and extending our electronic consenting system to support remote enrollment. A number of pediatric-specific challenges and opportunities is reviewed, including the need to re-consent patients when they reach 18 years of age, the ability to enroll family members accompanying patients and alignment with disease-specific research efforts at our institution and other pediatric centers to increase cohort sizes, particularly for rare diseases.
Highlights
The last two decades have seen a remarkable increase in the establishment of biobanks, especially those facilitating a broad research agenda across diseases, treatments and outcomes [1]
Input was solicited from investigators, the Institutional Review Board (IRB), research strategy committees, clinical governance committees, division chiefs and a patient family advisory committee, among others
Participants are able to withdraw at any time in which case samples and data are not used for any future research studies, though research on data and specimens distributed to investigators prior to the withdrawal request may continue
Summary
The last two decades have seen a remarkable increase in the establishment of biobanks, especially those facilitating a broad research agenda across diseases, treatments and outcomes [1]. What many share is the potential to advance our understanding of the genetic basis of disease and to support translational research studies and the development of diagnostic and therapeutic approaches personalized to individual patients, including children [3,4]. Pediatric-focused biobanks represent a rich opportunity, but they face unique challenges including rarity of conditions and logistical and regulatory barriers to recruitment of children into research studies [5,6]. Most United States (U.S.) biobanks enroll exclusively adult participants, with only 44% including any children and 2% focused entirely on pediatric patients [1]. A number of pediatric biobanks has been established, including at Boston. In an effort to further inform the advancement of pediatric biobanks and provide guidance to other institutions developing this resource, we describe here our institutional biobank, including basic organizational features, challenges and opportunities identified and comparison to a sampling of other U.S.-based pediatric biobanks
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