Forum - XML Standard

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  • 1.  Use cases for potential new XML levels

    Posted 10-20-2023 04:57 PM

    The XML Workgroup has started discussing proposing new levels of data in the NAACCR XML hierarchy. The current levels are NaaccrData, Patient, Tumor. 
    We want to gather use cases for the suggested new levels to support a proposal. 

    The use cases could be for central and/or hospital registries, for research files, etc. The use case should have a need to transmit or store data in NAACCR XML format. Like you might store extra data in registry software database tables but never need to transmit it in XML - that data wouldn't be a good candidate for an extra level. 

    These are the new levels we've discussed: 
    Address (parent element: Patient)
    Treatment (parent element: Tumor)
    Physicians (parent element: probably Tumor)

    Please comment if you have any suggestions of use cases or other new levels to consider!

    Valerie Yoder
    Utah Cancer Registry

  • 2.  RE: Use cases for potential new XML levels

    Posted 02-04-2024 05:01 AM

    Certainly! Here are some potential use cases and considerations for the suggested new levels in the NAACCR XML hierarchy:

    1. Address (parent element: Patient):

      • Use Case: Central registries may require transmitting and storing patient address information for epidemiological studies and tracking regional trends.
      • Consideration: Privacy regulations and security measures need to be implemented to ensure the confidentiality and protection of patient addresses during transmission.
    2. Treatment (parent element: Tumor):

      • Use Case: Hospitals and research institutions may need to transmit detailed treatment information for each tumor to facilitate collaborative research and analyze the effectiveness of different treatments.
      • Consideration: The treatment level should accommodate various types of cancer treatments, ensuring flexibility for different medical practices.
    3. Physicians (parent element: probably Tumor):

      • Use Case: Research studies may require information about the attending physicians for each tumor to evaluate the impact of different medical professionals on patient outcomes.
      • Consideration: Consider incorporating relevant details about physicians, such as specialties, qualifications, and involvement in the patient's treatment.
    4. Genetic Information (parent element: Tumor or Patient):

      • Use Case: Transmitting genetic data related to tumors or patients can support research on the genetic factors contributing to cancer development and progression.
      • Consideration: Compliance with ethical guidelines and privacy laws is crucial when handling sensitive genetic information.
    5. Clinical Trials (parent element: Patient or Tumor):

      • Use Case: For patients participating in clinical trials, transmitting specific trial-related data can assist in monitoring trial outcomes and analyzing the impact on cancer treatment.
      • Consideration: Inclusion of trial details, enrollment status, and outcomes should be standardized to ensure interoperability.
    6. Survivorship Data (parent element: Patient):

      • Use Case: Following patients post-treatment, survivorship data can be transmitted to understand long-term outcomes, survivorship challenges, and the effectiveness of post-treatment care.
      • Consideration: Data elements may include follow-up care details, recurrence information, and quality of life assessments.

    These use cases aim to showcase scenarios where additional levels could enhance the granularity and applicability of the NAACCR XML format for diverse registry and research purposes.

    Paul Ryan

  • 3.  RE: Use cases for potential new XML levels

    Posted 02-08-2024 09:21 AM

    These are excellent examples Paul and match what I was thinking also, thank you.

    As far as prioritizing:

    1. I think our group discussed starting with Address history and are looking into ways to store this longitudinal data.
    2. We also discussed Treatment and wanted to make sure we harmonize with other data standards, so we started looking at how the mCode data model stores this type of data.

    We should discuss next steps on an upcoming call.

    Isaac Hands
    Kentucky Cancer Registry