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Upcoming Field Testing: Call for Cases

  • 1.  Upcoming Field Testing: Call for Cases

    Posted 07-17-2019 03:00 PM

    From: Ruhl, Jennifer (NIH/NCI) [E]
    Sent: Wednesday, July 17, 2019 2:21 PM
    To: NCI SEER PIs <NCISEERPIs@mail.nih.gov>; NCI SEER Registry Managers <NCISEERRegistryManagers@mail.nih.gov>; NCI SEER QIE <NCISEERQIE@mail.nih.gov>
    Cc: NCI DCCPS DQAIB <ncidccpsdqaib@mail.nih.gov>
    Subject: Upcoming Field Testing: 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:            2019 Field Testing

    DATE:                 July 17, 2019

     

    The NAACCR Mid-Level Tactical Group is conducting field testing to determine how well proposed SSDIs (implementation 2021) 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 the NAACCR SSDI work group information for developing and refining the new proposed SSDIs. 

     

     

    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 per SSDI 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. Relevant reports that are needed are in parentheses.
      1. Colon: NRAS and BRAF (pathology reports, including special studies, addendums)
      2. Breast and Colon: Treatment effect (pathology report: based on surgical AFTER neoadjuvant therapy, plus any additional documentation from physician for clinical evaluation)

    1. For Breast: Will be testing treatment effect for Primary Tumor and Lymph Nodes

    2. For Colon: Will be testing treatment effect overall

      1. Lung: EGRF Mutational Analysis and ALK Rearrangement by Molecular Methods (pathology reports, including special studies, addendums)
      2. Pancreas: CA 19-9 Pre Tx-Lab Value (lab report or clinical documentation by physician)
      3. Neuroendocrine Tumors: Ki-67 (Ampulla of Vater, Appendix, Colon and Rectum, Pancreas, Small Intestine, Stomach) (only one of the sites is needed-(pathology reports, including special studies, addendums)
      4. Corpus carcinoma and corpus carcinosarcoma: ER and PR Summary ((pathology reports, including special studies, addendums)
      5. Esophagus and Stomach: HER2 Overall Summary ((pathology reports, including special studies, addendums)
      6. Oropharynx (includes primary sites: Base of Tongue [C024], Oropharynx [C100, C102-C109], Pharyngeal Tonsil [C111], Soft Palate [C051], Tonsil [C090-C091, C098-C099], Uvula [C052] ) and Cervical Lymph Nodes and Unknown Primary: HPV Data Collection Methods and Results ((pathology reports, including special studies, addendums). We are specifically looking for the following types of testing:

    1. HPV MRNA PCR

    2. HPV DNA PCR

    3. HPV DNA ISH

                                                             

    1. 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.

     

    1. Diagnosis Date: Please send 2019 cases if possible. If enough 2019 cases cannot be found, it is acceptable to send 2017-2018 cases.

     

    Required Parts of Medical Record: As noted above in #1, only the relevant report is needed (i.e., the pathology report or the lab report). If the information requested cannot be found in the relevant report, below is a list of other reports that may include this information that can be used. Only the relevant report is needed, not the entire medical record.

     

    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) (i.e. Special studies, Addendums, etc.)
      8. Immunophenotyping (flow cytometry and/or immunohistochemistry)
      9. Genetic testing
      10. Reports on tests frequently occurring outside the hospital (i.e. 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 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:          August 15, 2019

    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).  Please include your organization's name and that the data is ready for transmission. DO NOT include the case data on this initial email.

     

    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 con