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. |