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Development of the Precision Link Biobank at Boston Children's Hospital: Challenges and Opportunities
Florence T Bourgeois1,2,3, Paul Avillach4,5,6,7, Sek Won Kong8,9
1Computational Health Informatics Program (CHIP), Boston Children's Hospital, Boston, MA 02115, USA. florence.bourgeois@childrens.harvard.edu.
Insights
This study details the creation of a pediatric biobank, collecting patient specimens and electronic health record data. The biobank successfully enrolled 4900 patients, supporting future pediatric research.
Area of Science:
- Biomedical Research
- Biobanking
- Pediatric Health
Background:
- Biobanks are crucial for collecting biological specimens and clinical data from diverse patient populations.
- Organized biobanks support research by linking specimens to phenotypic information.
- Pediatric biobanks face unique challenges and opportunities in data collection and patient consent.
Purpose of the Study:
- To describe the implementation of a pediatric biobank.
- To establish a cohort linking biological specimens with electronic health record (EHR) data.
- To address pediatric-specific challenges in biobanking.
Main Methods:
- Implemented a pediatric biobank with in-person informed consent.
- Collected residual biological specimens as by-products of routine care.
- Linked specimens to phenotypic data derived from electronic health records (EHR).
Main Results:
- Enrolled 4900 patients, with 41% having associated blood samples for DNA processing.
- Established a system for collecting specimens and accessing EHR data for research.
- Developed a model for broad consent for data and specimen sharing.
Conclusions:
- The pediatric biobank successfully integrates specimens and EHR data for research.
- Future efforts focus on expanding enrollment and aligning with other research initiatives.
- Addressing pediatric-specific issues like re-consent and rare disease research is essential.
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.
