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Roxanne Noronha, Kaitlyn Flegg, Helen Dimaras; Development of a Pediatric Ophthalmology Biobank. Invest. Ophthalmol. Vis. Sci. 2021;62(8):2850.
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© ARVO (1962-2015); The Authors (2016-present)
To establish a biobank at the Hospital for Sick Children (SickKids) that catalyzes innovative research in pediatric ophthalmology, and document its first 6 months of operations.
The biobank leveraged the structural and technological foundation of the SickKids central biobank, which includes state-of-the-art liquid nitrogen facilities, CentraXX data management software, and technical experts trained in biobank operations. Eligible participants, identified in the electronic medical record, included any SickKids patient scheduled to have a tissue removed as part of standard of care that would otherwise be discarded. A broad informed consent model was adopted, allowing storage of tissues for future use in unspecified research; patients were provided with the option to opt-out of specific research components and contact preferences, as per standard SickKids broad consent practice. With patient informed consent, tissues were collected by the patient’s circle of care, then processed and stored according to international standards. Clinical annotated data associated with the tissues were collected from the patient’s electronic medical record and stored in CentraXX.A governance structure to oversee sharing of specimens with scientists was developed. The biobank was approved by the SickKids Research Ethics Board.
From June to December 2020, 16 eligible patients were identified; 14 were approached and 13 provided written informed consent (13/14=93% consent rate). Of consented patients, 13 agreed to whole genome sequencing research, 10 to sharing genomic sequencing data with industry, 13 to development of cell lines, 10 to sharing cell lines with industry, and 12 to other research by industry partners; 12 wished to be informed of carrier status and 10 agreed to future research contact. Patients covered 3 diagnoses (retinoblastoma, Coat’s disease, von-Hippel Lindau syndrome) and contributed 10 specimens (including tumor, retinal tissue, vitreous humor, aqueous humor and subretinal fluid), resulting in 18 aliquots for use in future research.
This is the first pediatric ophthalmology biobank of its kind. Future steps include registration with relevant biobank databases, and collaboration with additional clinical sites to increase tissue collection, patient partners to enhance recruitment, and scientists to promote use of the tissues.
This is a 2021 ARVO Annual Meeting abstract.
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