The CHSS Biobank Genomic Registry is a service to CHSS member institutions to enable collaborative genomic research in congenital heart disease. Its objective is to provide an inventory list of diagnosis-specific specimens that are stored within the Biobanks of participating CHSS institutions.
What Data is Needed?
The data supplied from each Biobank to the CHSS Data Center includes the institution’s name, a primary and secondary diagnosis for each patient and that Biobank’s unique patient ID code #.
What Does the Registry Contain?
What is Accessible?
The above figure is an example of the report generated in REDCap displaying percentage of samples in each diagnostic category. The diagnostic category is generated within the CHSS Registry using the primary and secondary diagnosis provided by each biobank. Clicking on any category produces a spreadsheet that details where each specimen is stored.
How can CHSS Institutional Biobank Custodians/Principal Investigators and Member Surgeons Participate?
This registry will be a rich resource for future research in congenital heart disease. We encourage each CHSS Biobank Custodian/Principal Investigator to participate in the CHSS Biobank Registry.
Please click here for important documents that you may need to join the Biobank Registry.
We encourage each CHSS Member Surgeon to participate as well.
If you would like to get involved, please contact Kathryn Coulter to get started with the application process.