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Development of the Precision Link Biobank at Boston Children’s Hospital: Challenges and Opportunities
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 speci...
Autores principales: | , , , , , , , , , , |
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Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
MDPI
2017
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Materias: | |
Acceso en línea: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5748633/ https://www.ncbi.nlm.nih.gov/pubmed/29244735 http://dx.doi.org/10.3390/jpm7040021 |
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author | 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. |
author_facet | 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. |
author_sort | Bourgeois, Florence T. |
collection | PubMed |
description | 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. |
format | Online Article Text |
id | pubmed-5748633 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2017 |
publisher | MDPI |
record_format | MEDLINE/PubMed |
spelling | pubmed-57486332018-01-07 Development of the Precision Link Biobank at Boston Children’s Hospital: Challenges and Opportunities 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. J Pers Med Review 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. MDPI 2017-12-15 /pmc/articles/PMC5748633/ /pubmed/29244735 http://dx.doi.org/10.3390/jpm7040021 Text en © 2017 by the authors. Licensee MDPI, Basel, Switzerland. This article is an open access article distributed under the terms and conditions of the Creative Commons Attribution (CC BY) license (http://creativecommons.org/licenses/by/4.0/). |
spellingShingle | Review 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. Development of the Precision Link Biobank at Boston Children’s Hospital: Challenges and Opportunities |
title | Development of the Precision Link Biobank at Boston Children’s Hospital: Challenges and Opportunities |
title_full | Development of the Precision Link Biobank at Boston Children’s Hospital: Challenges and Opportunities |
title_fullStr | Development of the Precision Link Biobank at Boston Children’s Hospital: Challenges and Opportunities |
title_full_unstemmed | Development of the Precision Link Biobank at Boston Children’s Hospital: Challenges and Opportunities |
title_short | Development of the Precision Link Biobank at Boston Children’s Hospital: Challenges and Opportunities |
title_sort | development of the precision link biobank at boston children’s hospital: challenges and opportunities |
topic | Review |
url | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5748633/ https://www.ncbi.nlm.nih.gov/pubmed/29244735 http://dx.doi.org/10.3390/jpm7040021 |
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