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  1. Project Scope Statements/Proposals
  2. PSS-1786

Develop a FHIR IG to provide a Framework for Disease Registry Submission Process

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    • Icon: Project Proposal Project Proposal
    • Resolution: Done
    • Icon: Medium Medium
    • None
    • Clinical Interoperability Council
    • To Be Determined
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      Current FHIR implementation guidance on Disease Registry submission is focused more on registry specific clinical and administrative content: e.g.,
      Breast Cancer Logical Models, Womens Health Technology Coordinated Registry Network Implementation Guide, mCode and other project efforts related to Cancer Interoperability.

      Healthcare providers submitting to disease registries have common problems with regard to the collection of data for a registry submission, preparing data for a submission, and submitting the data, but lack a FHIR IG that describes the artifacts that would help them to prepare a submission, and a description of the artifacts that would describe a submission. The model in which FHIR profiles or logical models would be defined for each disease registry to address its specific needs does not scale when there are hundreds of disease registries.

      This project proposal addresses the need to provide a common framework for disease registries that enables:
      A disease registry to ...
      1. Describe the data they wish to collect.
      2. Define the constraints on the submission to indicate how data should should be submitted.
      3. Identifying the trigger events that might indicate a submission is needed.

      A healthcare provider organization to ...
      1. Identify sources of data that might appear within a disease registry submission.
      2. Support processes to automatically extract and format data for submission.
      Show
      Current FHIR implementation guidance on Disease Registry submission is focused more on registry specific clinical and administrative content: e.g., Breast Cancer Logical Models, Womens Health Technology Coordinated Registry Network Implementation Guide, mCode and other project efforts related to Cancer Interoperability. Healthcare providers submitting to disease registries have common problems with regard to the collection of data for a registry submission, preparing data for a submission, and submitting the data, but lack a FHIR IG that describes the artifacts that would help them to prepare a submission, and a description of the artifacts that would describe a submission. The model in which FHIR profiles or logical models would be defined for each disease registry to address its specific needs does not scale when there are hundreds of disease registries. This project proposal addresses the need to provide a common framework for disease registries that enables: A disease registry to ... 1. Describe the data they wish to collect. 2. Define the constraints on the submission to indicate how data should should be submitted. 3. Identifying the trigger events that might indicate a submission is needed. A healthcare provider organization to ... 1. Identify sources of data that might appear within a disease registry submission. 2. Support processes to automatically extract and format data for submission.

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          Kwboone Keith W. Boone
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