Medical Informatics Initiative - CORD - ImplementationGuide

2 Context

The Implementation Guide Rare Disease Documentation (IG RDD) is a central document in the sub-project AP2 of the collaborative project CORD-MI within the funding program Medical Informatics Initiative of the BMBF.

The IG RDD focuses on the complementary documentation of patient characteristics or - if possible - on the complementary data processing of existing patient data and is based on the following modules of the core data set of the MI initiative, if available and possible:

  1. Modul PERSON (specifically the FHIR resource Patient)
  2. Modul CASE (three-level self-recursive hierarchy of the FHIR resource Encounter)
  3. Modul DIAGNOSIS (FHIR resource Condition)
  4. Modul PROCEDURE (FHIR resource Procedure)
  5. Modul MEDICATION (FHIR resources Medication, MedicationAdministration, MedicationStatement)
  6. Modul LABORATORY FINDING (FHIR resources Observation, DiagnosticReport, ServiceRequest)
  7. Modul SYMPTOM/PHENOTYPE - Link coming soon

The individual components described and required or proposed in these modules can be considered as a dataset that shares some intersection with the datasets in rare disease registries that are presented in the following section.

Efforts will be made to avoid duplicate data entry by providing characteristics from the care documentation as ergonomically as possible in the SE documentation. With regard to the characteristics that are required in the care documentation but not in the registry documentation, no exclusion takes place in the unified SE documentation. This does not necessarily require joint storage. In general, the data is intended to remain where it was collected.