Table 2.

Features of selected U.S.-based pediatric biobanks.

Name	Institution	Patient Population	Consent Type	Sample Types	Medical Record Data Linked to Sample?	Identified Data?	Re-Contact Type	Able to Share Data and/or Samples Outside of Institution?	Prospective Sample and/or Clinical Data Collected (i.e., beyond Consent Date)?
Precision Link Biobank	Boston Children’s Hospital	All	Opt-in, fully-informed consent Any research question	Research blood and saliva samples Residual clinical samples	Yes	Yes	To receive information about the Biobank To receive requests for additional data and samples To learn about potential research studies of interest To receive information on incidental research findings	Yes, de-identified data with local faculty member as co-investigator	Yes
Better Outcomes for Children [19]	Cincinnati Children’s Hospital Medical Center	All	Opt-in, using condensed consent document presented by hospital registrar	Residual clinical samples	Yes, through linkage with a separate repository with clinical data	No	To receive information on incidental research findings	Yes, de-identified data with local faculty member as co-investigator	Yes
Pediatric BioVU [20]	Vanderbilt University Medical Center	All	Opt-out * Any research question related to health and wellness	Residual clinical samples	Yes	No	None	Yes, de-identified data with local faculty member as co-investigator	Yes
Pediatric CNS Biorepository	Children’s National Health System	Patients with neurological diseases	●Different types of consents: -opt-in, fully-informed consent -waived consent -post-mortem consent ●Any research question related to neurological diseases	Research blood, saliva, tissue, CSF, and urine samples Residual clinical samples	Yes, depending on the type of consent obtained	Yes, depending on the type of consent obtained	●Depending on type of consent: -To receive requests for additional data and samples -To request to use the data and samples for other research studies	Yes, de-identified data	Yes
Pediatric Cancer Genome Project	St. Jude’s Children’s Research Hospital	Patients with oncologic and hematologic conditions	Opt-in, fully-informed consent Any research question	Research blood draws and urine samples Residual clinical samples	Yes	Yes	To receive information about the biobank To receive requests for additional data and samples To learn about potential research studies of interest To receive information on incidental research findings	Yes, de-identified data	Yes
The Down Syndrome Achieves Down Syndrome Biobank	Nationwide Children’s **	Patients with Down syndrome	Opt-in, fully-informed consent	Research blood samples	Yes, annotated with specific clinical data	Yes, to the collecting site; de-identified for external sharing	To receive requests for additional data and samples To learn about potential research studies of interest To receive information on incidental research findings	No, for the time being limited to members within network	No
Children’s Brain Tissue Research Consortium	Children’s Hospital of Philadelphia **	Patients with CNS tumors	Opt-in, fully-informed consent Consent waiver for deceased patients	Research saliva samples Residual clinical tissue, blood, and CSF samples	Yes, annotated with specific clinical data	Yes, to the collecting site; de-identified for external sharing	None	Yes, de-identified data	Yes

* Patients must acknowledge that they are choosing not to opt out; ** institution acts as the coordinating center and manages data and sample storage.