Development of a Biobank for Rare Pediatric Eye Cancers
Abstract
Rare pediatric eye cancers (R-PEC) represent a significant threat to life if not diagnosed and treated in a timely fashion. Children that survive R-PEC may suffer from blindness or severe visual impairment, negatively impacting quality of life. It is notoriously challenging to study R-PECs, because it is difficult to accumulate the number of specimens, clinical data and images needed to yield reliable scientific results. The aims of this project are to (1) build a robust repository of R-PEC specimens, clinical data, images and derived resources from national and international Partner Sites; and (2) establish and evaluate an operational and governance structure that addresses patient lived experience and financial, operational and social sustainability. A total of 11 participants have been enrolled at SickKids with 10 specimens collected, processed and stored. Of the 8 Partner Sites listed on the original grant application, 2 have withdrawn from the project, 3 are nearing completion of the requisite material data access agreement (MDTA) and 3 are navigating unanticipated barriers before the MDTA can be executed. Processes have been established for material and data access requests, patient advocates have been engaged and a comprehensive business plan was created, inclusive of operational, governance and financial specifications.
Document Details
- Document Type
- Technical Report
- Publication Date
- Jul 01, 2023
- Accession Number
- AD1210813
Entities
People
- Helen Dimaras
- Kaitlyn Flegg
- Roxanne Noronha
Organizations
- Hospital for Sick Children