title: The Biobank Portal for Partners Personalized Medicine: A Query Tool for Working with Consented Biobank Samples, Genotypes, and Phenotypes Using i2b2.
abstract: We have designed a Biobank Portal that lets researchers request Biobank samples and genotypic data, query associated electronic health records, and design and download datasets containing de-identified attributes about consented Biobank subjects. This do-it-yourself functionality puts a wide variety and volume of data at the fingertips of investigators, allowing them to create custom datasets for their clinical and genomic research from complex phenotypic data and quickly obtain corresponding samples and genomic data. The Biobank Portal is built upon the i2b2 infrastructure [1] and uses an open-source web client that is available to faculty members and other investigators behind an institutional firewall. Built-in privacy measures [2] ensure that the data in the Portal are utilized only according to the processes to which the patients have given consent.
authors.affiliation: Partners HealthCare, One Constitution Center, Boston, MA 02129, USA. vgainer@partners.org.
authors.forename: Vivian S
authors.initials: VS
authors.lastname: Gainer
authors.affiliation: Partners HealthCare, One Constitution Center, Boston, MA 02129, USA. acagan@partners.org.
authors.forename: Andrew
authors.initials: A
authors.lastname: Cagan
authors.affiliation: Partners HealthCare, One Constitution Center, Boston, MA 02129, USA. vcastro@partners.org.
authors.forename: Victor M
authors.initials: VM
authors.lastname: Castro
authors.affiliation: Partners HealthCare, One Constitution Center, Boston, MA 02129, USA. sduey@partners.org.
authors.forename: Stacey
authors.initials: S
authors.lastname: Duey
authors.affiliation: Partners HealthCare, One Constitution Center, Boston, MA 02129, USA. bghosh3@partners.org.
authors.forename: Bhaswati
authors.initials: B
authors.lastname: Ghosh
authors.affiliation: Partners HealthCare, One Constitution Center, Boston, MA 02129, USA. agoodson@partners.org.
authors.forename: Alyssa P
authors.initials: AP
authors.lastname: Goodson
authors.affiliation: Partners HealthCare, One Constitution Center, Boston, MA 02129, USA. sgoryachev@partners.org.
authors.forename: Sergey
authors.initials: S
authors.lastname: Goryachev
authors.affiliation: Partners HealthCare, One Constitution Center, Boston, MA 02129, USA. rmetta@partners.org.
authors.forename: Reeta
authors.initials: R
authors.lastname: Metta
authors.affiliation: Partners HealthCare, One Constitution Center, Boston, MA 02129, USA. tdwang@partners.org.
authors.forename: Taowei David
authors.initials: TD
authors.lastname: Wang
authors.affiliation: Partners HealthCare, One Constitution Center, Boston, MA 02129, USA. nwattanasin@partners.org.
authors.forename: Nich
authors.initials: N
authors.lastname: Wattanasin
authors.affiliation: Partners HealthCare, One Constitution Center, Boston, MA 02129, USA. snmurphy@partners.org.|Department of Neurology, Massachusetts General Hospital, Boston, MA 02114, USA. snmurphy@partners.org.
authors.forename: Shawn N
authors.initials: SN
authors.lastname: Murphy
keywords: Biobank IT; Biobank information technology; Biobank software; personalized medicine IT; phenotype; precision medicine IT