Kentucky Cancer Registry HPV Typing 2

The Kentucky Cancer Registry (KCR), proposes to accomplish the specific tasks associated with this research effort using a framework where KCR serves as the “Honest Broker” for obtaining the required tissue specimens. KCR is the official population-based cancer surveillance program for the Commonwealth of Kentucky. The law that established KCR specifically states that “Each health facility shall grant to the cancer registry access to all records which would identify cases of cancer or would establish characteristics of the cancer, treatment of the cancer, or status of any identified cancer patient.” In previous studies, we have found that having explicit legal access to the information about each cancer patient has helped to make each pathology lab more comfortable and willing to share their tissue specimens. KCR knows the identities of each cancer patient and has the legal right to that information. The pathology lab also knows the identities of each patient for which they have tissue. Having KCR serve as the honest broker means that the identity of the patient will not be further disclosed. There are 48 pathology labs that will see histologic material from Kentucky cancer patients. KCR will identify the pathology labs where tissue for each of the selected cases is stored, contact each lab and determine the availability of tissue for each selected case and go through all necessary procedures for obtaining the tissue. This will include obtaining any lab or hospital required IRB approval as well as any other requirements. All tissue blocks will be sent to KCR and de-identified. KCR will deliver all of the bar coded de-identified blocks to the Markey Cancer Center, Biospecimen and Tissue Procurement Research Lab. The Markey Cancer Center, Biospecimen and Tissue Procurement Research Lab will cut all of the blocks and prepare the specimens for shipping to CDC. KCR will retrieve the blocks from the Markey Cancer Center, Biospecimen and Tissue Procurement Research Lab and return them to the contributing clinical pathology lab. KCR will also pick up all of the prepared tissue specimens and ship them to CDC. Finally, KCR will create the necessary de-identified data set that will include the codes for linking with the HPV genotyping information.