• 2018-2019 DX year
• Sites Reviewed: Bladder, Breast, Lung, Colon, and Prostate
• Directly coded Summary Stage 2018
• 22 cases

• Lung: 6 of the 7 Lung cases required recoding to a higher code; 4 cases initially coded 1, 3, or 9 were recoded to 7 for distant disease supported in text. Two cases with Summary Stage code 2 and 3 were recoded to Summary Stage 4 (regional extension plus lymph node involvement) from the documented information. Summary Stage code 4, was often confused with the previous AJCC TNM distant metastasis code 4. The correct Summary Stage for distant metastasis is code 7.
• Colon: 3 of the 4 cases reviewed with Summary Stage 2 were down coded to Summary Stage 1 based on invasion of pericolorectal tissue in non peritonealized subsite.
• Breast: 2 Breast cases coded to 9 contained enough information to assign code 1.
• Prostate: 1 case coded to 3 was recoded to 7 - admission text documented osseous metastasis.
• Bladder: 1 case was changed from code 9 (unknown) to code 4 - admission text described vaginal involvement with positive lymph nodes.

• The Summary Stage Coding Manual is your best friend. It is detailed, clear, and easy to understand.
• Take the time to read the Notes in each Summary Stage Schema. They give clear explanations on the codes and instructions on when to use them.
• Approach Summary Stage 2018 as its' own unique staging system. The codes and code definitions differ from other staging systems.
• Review the text in your abstract to ensure it supports the Summary Stage you have assigned to the case.

• 2019 DX year
• Site Range=C700-C719
• Surgery Primary Site coded 55
• 93 Cases met these criteria

• 4 cases had lobectomy text that supported code 55 (1 frontal and 3 temporal)
• 4 cases were spinal cord tumors with gross total resections or resections and are only coded 22
• 85 cases were recoded to 30 or 21 because the operative and/or pathology reports had text that supported coding the resection of the tumor. A brain lobectomy was not performed.

• Only use code 55 when there is clear documentation that a lobectomy of the brain was performed. This is most often done when there is a temporal tumor.
• Benign meningiomas are rarely removed with radical surgery like a brain lobectomy
• The codes 20-30 are used to describe the resection of the tumor. The nature of the procedure and extent of resection does not qualify for coding a partial or total lobectomy of the brain.
• Spinal code tumors resections are only coded to 22
•  Keep documenting the Gross total resection (GTR) of the tumor mentioned in the operative report and/or path report and any helpful operative comments like “completely resected”, “entire tumor removed”.
• Always review a case with a surgery code of 55. The use of surgery code 55 should be the exception, not the rule for coding brain surgery and a lobectomy should be documented.
• In short
• Brain/CNS Surg codes 20-30=Resection of the TUMOR
• Brain/CNS Surg codes 40 and 55=Partial or total resection of the LOBE OF BRAIN

• Survey – Collection of socio-demographic, family history, and lifetime exposure to various social/racial stressors
• Saliva sample
• Tumor tissue

• Since we anticipated varied lending policies and fee structures across all facilities that stored tissue for the CRGC’s RESPOND participants, we knew from the start that the database needed to have the following key features:
•  It is comprehensive in its ability to track all pertinent information on facilities and participants and, at the same time, flexible enough to allow for any updates needed along the way.
• It can monitor and easily generate weekly progress reports. 
• It is easy to use and can provide snapshots of most updated information on facilities and participants associated with them to help our staff during follow-up calls.
• In order to build such a database, we needed reliable information and good planning. Thus, we relied on knowledge we had gained from our prior experience in recruiting facilities and collecting biospecimen samples as well as information shared by some of the registries that had been involved in similar work before.
• Once the database was built, it was tested by both future users as well as those experienced in tissue requests. Their feedback was used to further fine-tune the database. Once it was in the field, we continued to make some minor changes to our request procedure and to the database in response to new information obtained from other sites, including researchers from Harvard University who shared their tissue request experience during one of our weekly study team meetings.  

• The well thought out procedure and the tracking database allowed for efficiency in generating and sharing tissue requests and all pertinent materials (such as signed informed consent, HIPAA release form) with facilities.
• We were able to quickly review special requirements for various facilities in a summary list generated from the database and address them in a timely and appropriate manner. Sometimes this required providing further clarification on what we were requesting, for example, assuring the facility that participants’ tissue blocks would be sectioned by a pathologist at Johns Hopkins University and that the remaining tissue would be returned. In some cases, it meant further conversation with the facility leadership  As a result of these efforts, we have been successful in procuring tissue specimens for 43 participants, out of 91 requested (response rate = 47%) within the last three months. Of these, 10 were procured after additional conversation and negotiation with the facilities. The remaining requests are undergoing additional follow up to increase our sample size. CRGC will continue to request tissue specimens from consenting participants for another 12 to 18 months.
•   When we first started tissue requests, this database allowed us to ramp up the requests to several facilities at a time and helped us with timely follow-ups. As a result, we made significant weekly progress which garnered positive attention from other study sites and even requests from a couple of registries to provide guidance in building their own tracking database.