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Development of the Precision Link Biobank at Boston Children’s Hospital: Challenges and Opportunities

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Computational Health Informatics Program (CHIP), Boston Children’s Hospital, Boston, MA 02115, USA
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Division of Emergency Medicine, Boston Children’s Hospital, Boston, MA 02115, USA
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Department of Pediatrics, Harvard Medical School, Boston, MA 02115, USA
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Department of Biomedical Informatics, Harvard Medical School, Boston, MA 02115, USA
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Division of Endocrinology, Boston Children’s Hospital, Boston, MA 02115, USA
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Biobank Core Lab, Biorepository, Boston Children’s Hospital, Boston, MA 02115, USA
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Information Services Department, Business Intelligence & Clinical Research Informatics, Boston Children’s Hospital, Boston, MA 02115, USA
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Department of Biological Chemistry & Molecular Pharmacology, Boston, MA 02115, USA
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Office of Clinical Investigations, Boston Children’s Hospital, Boston, MA 02115, USA
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Author to whom correspondence should be addressed.
Academic Editor: Stephen B. Liggett
J. Pers. Med. 2017, 7(4), 21; https://doi.org/10.3390/jpm7040021
Received: 15 September 2017 / Revised: 30 November 2017 / Accepted: 12 December 2017 / Published: 15 December 2017
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. View Full-Text
Keywords: pediatric biobank; biospecimens; biorepository pediatric biobank; biospecimens; biorepository
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MDPI and ACS Style

Bourgeois, F.T.; Avillach, P.; Kong, S.W.; Heinz, M.M.; Tran, T.A.; Chakrabarty, R.; Bickel, J.; Sliz, P.; Borglund, E.M.; Kornetsky, S.; Mandl, K.D. Development of the Precision Link Biobank at Boston Children’s Hospital: Challenges and Opportunities. J. Pers. Med. 2017, 7, 21. https://doi.org/10.3390/jpm7040021

AMA Style

Bourgeois FT, Avillach P, Kong SW, Heinz MM, Tran TA, Chakrabarty R, Bickel J, Sliz P, Borglund EM, Kornetsky S, Mandl KD. Development of the Precision Link Biobank at Boston Children’s Hospital: Challenges and Opportunities. Journal of Personalized Medicine. 2017; 7(4):21. https://doi.org/10.3390/jpm7040021

Chicago/Turabian Style

Bourgeois, Florence T.; Avillach, Paul; Kong, Sek Won; Heinz, Michelle M.; Tran, Tram A.; Chakrabarty, Ramkrishna; Bickel, Jonathan; Sliz, Piotr; Borglund, Erin M.; Kornetsky, Susan; Mandl, Kenneth D. 2017. "Development of the Precision Link Biobank at Boston Children’s Hospital: Challenges and Opportunities" J. Pers. Med. 7, no. 4: 21. https://doi.org/10.3390/jpm7040021

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