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. Author manuscript; available in PMC: 2019 Jul 1.
Published in final edited form as: Pediatr Neurol. 2018 Apr 18;84:11–20. doi: 10.1016/j.pediatrneurol.2018.04.005

Table 4.

Critical goals which must be achieved for the successful development of a centralized tissue bank

Goals for a successful Tissue Bank
1. Enlist key clinicians, surgeons, and pathologists at primary (later secondary) participating institutions to promote timely salvage and banking of excess tissue from medically necessary tissue resections
2. Procure NIH or other nonpartisan funding to fund both centralized and local facilitators, storage, shipping, and processing fees
3. Development of inclusion criteria for each IRB-consented donor is needed, which would include clinical documentation and verification of diagnosis
4. Develop a shared, multi-institutional IRB protocol to facilitate sample acquisition using standardized instructions and kits for collection, handling, portioning, processing, shipping, and storage of fresh, snap frozen, and fixed paraffin-embedded tissue samples
5. Standardized forms must be developed for collection of pertinent clinical information from each consented donor and input of that data into a centralized, web-accessed database cataloging all banked specimens from all participating institutions
6. Consent protocols will require a standardized banking consent form and assignment of a unique SWS identifier (preferably pre-assigned before scheduled surgery to each specimen, regardless of storage location)
7. The establishment of a dbGaP project (database of Genotypes and Phenotypes) is needed to archive and distribute the results of studies that have investigated the interaction of genotype and phenotype and to store SWS/PWB sequence data
8. Must determine a cost/subsidy structure for infra-structural development, maintenance, and usage
9. System of outcomes or publication tracking should be developed.