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2023 Call For Cases

FROM:                  Serban Negoita (NCI SEER): Co-chair NAACCR Mid-Level Tactical Group

                                Manxia Wu (NPCR): Co-chair NAACCR Mid-Level Tactical Group

SUBJECT:             2023 Field Testing

DATE:                    7/25/2023

The Senior-Level and Mid-Level Tactical Groups are conducting field testing to determine how well proposed Data Items are developed and to collect feedback from registrars prior to implementation of these data items. The field test assessments ask registrars to code the proposed SSDIs using original medical records. Records are not to be submitted without following the specific instructions below.

This field test will provide Standard Setters information for developing new data items. 

Pediatric Registrars take notice!!

This year we will be field testing several data items that are related to pediatric cancers. Please pay attention to the age requirement for each of the data items as some may apply to all ages. We will also be field testing a data item that is a non-pediatric cancer.

I.            Description of Cases Requested

Confidentiality

Cases must be de-identified before submitting.  Remove/delete all personal identifying information to protect privacy and assure confidentiality.

Personal identifiers include:

• Patient name
• Physician names
• Healthcare facility name
• Any address and/or geographic information (street, city, state, zip code)
• Telephone numbers
• Date of birth
• Social security number
• Medical record number
• Any other identifying information

Remove or delete all personal identifiers from each page of the medical record.

1. Neoplasm type: Submit at least 1 case for each cancer type and their corresponding SSDI(s) listed below when possible. There is no minimum or maximum number of cases that can be sent.  The cases should be reportable cases that are single primaries only. For those cancer types that have multiple SSDIs, one case can cover all the data items. It is also acceptable to submit a case that may not have the information for all the data items. The most relevant reports that are needed are in parentheses.

PEDIATRIC data items

1. Acute Lymphocytic Leukemia: Ages 00-19 

:

1. CNS Involvement (pathology reports, imaging, physician notes), with the following involvement

1. No clinical signs of CNS involvement/no blasts in CSF OR
2. No clinical signs of CNS involvement/blasts in CSF  OR
3. Clinical signs of CNS involvement

2. White Blood Cell Count (laboratory report)

2. Hodgkin Lymphomas: Ages 00-19

1. Any or all the following:  Staging Information, involvement of nodal or extranodal regions, nodal involvement above and below diaphragm, metastatic disease, including lung involvement, CNS involvement, bone marrow involvement (pathology reports, imaging, physician notes) (Also known as St. Jude Murphy Staging)

3. Non-Hodgkin Lymphomas: Ages 00-19

1. Any or all the following:  Staging Information, involvement of nodal or extranodal regions, nodal involvement above and below diaphragm, metastatic disease, including lung involvement, CNS involvement, bone marrow involvement (pathology reports, imaging, physician notes) (Also known as St. Jude Murphy Staging)

4. Astrocytoma: Ages 00-19

1. Presence/absence of metastatic disease, and/or

2. BRAF Mutational Analysis (pathology reports, molecular reports, physician notes). Note, the common BRAF type for this site is KIAA1549-BRAF

5. Ependymoma: Ages 00-19 and Medulloblastoma: All Ages

1. Presence of any of the following:

1. Tumor cells in the CSF
2. Visible metastasis in CNS
3. Visible metastasis in spine OR Visible metastasis in cervicomedullary (junction)
4. Metastasis outside of the central nervous system

6. Neuroblastoma: All Ages

1. Extension of primary tumor, with or without regional lymph nodes or mets, mention of image defined risk factors (imaging, physician notes) (International Neuroblastoma Risk Group Staging System)

Note: Do not send results from a surgical pathology report. This data item is a clinical evaluation only

2. n-MYC amplification (CAP protocol, pathology reports, molecular reports, physician notes)
3. International Neuroblastoma Pathology Classification (INPC) (CAP protocol, biopsy or surgical pathology reports, physician notes)

7. Retinoblastoma: All ages

1. Extension of primary tumor, with or without regional lymph nodes or mets (surgical pathology reports, imaging, physician's notes, with or without involvement of contralateral eye (International Retinoblastoma Staging System)

8. Renal Tumors: Ages 00-19

1.    Extension of primary tumor, with or without regional lymph nodes or mets (surgical pathology reports, with or without neoadjuvant therapy; imaging (for Stage IV patients only), physicians notes, with or without involvement of contralateral kidney (Wilms Tumor Staging System)

2.    Chromosome 1p status (pathology reports, molecular reports, physician notes)

3.    Chromosome 1q status (pathology reports, molecular reports, physician notes)

4.    Chromosome 16q status (pathology reports, molecular reports, physician notes)

5.    EWSRI-FLI1 (Ewing Sarcoma only, 9364/3) (CAP Protocol, pathology reports, molecular reports, physician notes)

9. Hepatoblastoma: All ages

1. Presence/absence of metastatic disease

10. Bone Tumors: Ages 00-19

1.      Presence/absence of metastatic disease

11. Rhabdomyosarcoma: Ages 00-19

1. Extension of primary tumor, with or without regional lymph nodes or mets (surgical pathology reports, imaging, physician's notes)

12. Non-Rhabdomyosarcoma: Ages 00-19

1.         Extension of primary tumor, with or without regional lymph nodes or mets (surgical pathology reports, imaging, physician's notes)

13. Testicular: Ages 00-19

1.         Extension of primary tumor, with or without regional lymph nodes or mets (surgical pathology reports, imaging, physician's notes)

14. Ovary: Ages 00-19

1.         Extension of primary tumor, with or without regional lymph nodes or mets (surgical pathology reports, imaging, physician's notes

NON-PEDIATRIC data item

15. PD-L1 (C340-C349):

                                                                     i.      For non-small cell carcinomas only (excludes small cell carcinomas: 8041/3, 8043/3, 8044/3, 8045/3) (pathology reports (biopsy, surgical), molecular reports)

2. Difficulty Level: Most of the cases should be among the common, not rare, or difficult. These cases should be typical cases registries can expect in their overall caseload.

3. Diagnosis Date: Please send 2023 cases if possible. If enough 2023 cases cannot be found, it is acceptable to send 2021-2022 cases.

4. Required Parts of Medical Record: Please include all records that would be available to an abstractor collecting the case at the facility.

The case files could include information such as the following:

1. Discharge Summary(ies)
2. History and Physical(s)
3. Consultation(s)
4. Imaging Report(s), in chest/abdominal/pelvic CT and PET-CT scans
5. Procedure Report(s)
6. Operative Report(s)
7. Pathology Report(s) (e.g., Special studies, Addendums, etc.)
8. Immunophenotyping (flow cytometry and/or immunohistochemistry)
9. Genetic testing
10. Reports on tests frequently occurring outside the hospital (e.g., cytogenetics)

II.            Case Preparation

·         Electronic submission to IMS (see instructions for how to send cases below). If you do not have cases in electronic format, then please scan the records into pdf or OCR format to send electronically.

·         Remove all personal identifiers from all reports

·         Number the cases sequentially, beginning with Case 1 (Case 1, Case 2, Case 3, etc.) on electronic file name, not on inside of document

·         Please retain for future uses, the patient ID or medical record number associated with the case number on the file or any other useful information that will help you identify the original source. Please do not transmit these numbers.

Case Submission: Please do not hold cases until the deadline.  Send cases as soon as you locate them. 

Last Day to Submit Cases:          September  11, 2023

When to send:                               Please send cases as they are identified. Multiple submissions are preferred rather than waiting to send them all right before the deadline.

How to send:                                 Instructions for submitting cases

Case data will be collected by Information Management Services, Inc., who provides technical support for SEER. 

When you are ready to transmit the case data, please email Nicki Schussler (SchusslerN@imsweb.com).  DO NOT include the case data on this initial email. Please include your organization's name and that the data is ready for transmission.

You will then receive an email via the IMS Encrypted data exchange server referencing the call for data.  Please respond to this email from the encrypted data exchange, attaching your data file.  If you are required to encrypt the file by your organization's policies, please provide a phone number and Nicki will contact you to get the password.

Thank you for assisting with the field-testing call for cases.