MII IG Kerndatensatz-Modul Seltene Erkrankungen
2027.0.0-ballot - Germany

MII IG Kerndatensatz-Modul Seltene Erkrankungen - Downloaded Version 2027.0.0-ballot See the Directory of published versions

Resource Profile: MII PR SE Registerteilnahme

Official URL: https://www.medizininformatik-initiative.de/fhir/ext/modul-seltene/StructureDefinition/mii-pr-seltene-registerteilnahme Version: 2027.0.0-ballot
Active as of 2026-09-14 Computable Name: MII_PR_Seltene_Registerteilnahme

Teilnahme einer Person an einem Register für seltene Erkrankungen, insbesondere an einem Register eines European Reference Network (ERN). Gedacht für die Dokumentation aus zweiter Hand im Versorgungskontext: festgehalten wird, dass die Person teilnimmt. Nah am Probanden-Profil des MII KDS Moduls Studie, aber bewusst nicht davon abgeleitet, weil dessen Pflichtangabe consent den Sekundärfall ausschließt.

Usages:

You can also check for usages in the FHIR IG Statistics

Formal Views of Profile Content

Description of Profiles, Differentials, Snapshots, and their representations.

NameFlagsCard.TypeDescription & Constraints    Filter: Filtersdoco
.. ResearchSubject 0..* ResearchSubject Physical entity which is the primary unit of interest in the study
... implicitRules ?!Σ 0..1 uri A set of rules under which this content was created
... Slices for extension 0..* Extension Extension
Slice: Unordered, Open by value:url
.... extension:register S 0..1 Reference(Library) Katalogeintrag des Registers als Library (optional)
URL: https://www.medizininformatik-initiative.de/fhir/ext/modul-seltene/StructureDefinition/mii-ex-seltene-register
... modifierExtension ?! 0..* Extension Extensions that cannot be ignored
... status ?!SΣ 1..1 code Status der Teilnahme
Binding: ResearchSubjectStatus (required): Indicates the progression of a study subject through a study.
... period SΣ 0..1 Period Zeitraum der Registerteilnahme
.... start SΣC 0..1 dateTime Starting time with inclusive boundary
... study SΣ 1..1 Reference(ResearchStudy) Das Register, als ResearchStudy geführt
... individual SΣ 1..1 Reference(Patient) Who is part of study
... consent S 0..1 Reference(Consent) Nur zu setzen, wenn die Einwilligung am dokumentierenden Standort tatsaechlich als Ressource vorliegt

doco Documentation for this format

Terminology Bindings

Path Status Usage ValueSet Version Source
ResearchSubject.status Base required ResearchSubjectStatus 📍4.0.1 FHIR Std.

Constraints

Id Grade Path(s) Description Expression
dom-2 error ResearchSubject If the resource is contained in another resource, it SHALL NOT contain nested Resources contained.contained.empty()
dom-3 error ResearchSubject If the resource is contained in another resource, it SHALL be referred to from elsewhere in the resource or SHALL refer to the containing resource contained.where((('#'+id in (%resource.descendants().reference | %resource.descendants().as(canonical) | %resource.descendants().as(uri) | %resource.descendants().as(url))) or descendants().where(reference = '#').exists() or descendants().where(as(canonical) = '#').exists() or descendants().where(as(canonical) = '#').exists()).not()).trace('unmatched', id).empty()
dom-4 error ResearchSubject If a resource is contained in another resource, it SHALL NOT have a meta.versionId or a meta.lastUpdated contained.meta.versionId.empty() and contained.meta.lastUpdated.empty()
dom-5 error ResearchSubject If a resource is contained in another resource, it SHALL NOT have a security label contained.meta.security.empty()
dom-6 best practice ResearchSubject A resource should have narrative for robust management text.`div`.exists()
ele-1 error **ALL** elements All FHIR elements must have a @value or children hasValue() or (children().count() > id.count())
ext-1 error **ALL** extensions Must have either extensions or value[x], not both extension.exists() != value.exists()

NameFlagsCard.TypeDescription & Constraints    Filter: Filtersdoco
.. ResearchSubject 0..* ResearchSubject Physical entity which is the primary unit of interest in the study
... Slices for extension 0..* Extension Extension
Slice: Unordered, Open by value:url
.... extension:register S 0..1 Reference(Library) Katalogeintrag des Registers als Library (optional)
URL: https://www.medizininformatik-initiative.de/fhir/ext/modul-seltene/StructureDefinition/mii-ex-seltene-register
... identifier S 0..1 Identifier Pseudonym der Person im Register
... status S 1..1 code Status der Teilnahme
.... start S 0..1 dateTime Starting time with inclusive boundary
... study S 1..1 Reference(ResearchStudy) Das Register, als ResearchStudy geführt
... individual S 1..1 Reference(Patient) Who is part of study
... consent S 0..1 Reference(Consent) Nur zu setzen, wenn die Einwilligung am dokumentierenden Standort tatsaechlich als Ressource vorliegt

doco Documentation for this format
NameFlagsCard.TypeDescription & Constraints    Filter: Filtersdoco
.. ResearchSubject 0..* ResearchSubject Physical entity which is the primary unit of interest in the study
... id Σ 0..1 id Logical id of this artifact
... meta Σ 0..1 Meta Metadata about the resource
... implicitRules ?!Σ 0..1 uri A set of rules under which this content was created
... text 0..1 Narrative Text summary of the resource, for human interpretation
This profile does not constrain the narrative in regard to content, language, or traceability to data elements
... contained 0..* Resource Contained, inline Resources
... Slices for extension 0..* Extension Extension
Slice: Unordered, Open by value:url
.... extension:register S 0..1 Reference(Library) Katalogeintrag des Registers als Library (optional)
URL: https://www.medizininformatik-initiative.de/fhir/ext/modul-seltene/StructureDefinition/mii-ex-seltene-register
... modifierExtension ?! 0..* Extension Extensions that cannot be ignored
... identifier SΣ 0..1 Identifier Pseudonym der Person im Register
... status ?!SΣ 1..1 code Status der Teilnahme
Binding: ResearchSubjectStatus (required): Indicates the progression of a study subject through a study.
... period SΣ 0..1 Period Zeitraum der Registerteilnahme
.... id 0..1 string Unique id for inter-element referencing
.... extension 0..* Extension Additional content defined by implementations
Slice: Unordered, Open by value:url
.... start SΣC 0..1 dateTime Starting time with inclusive boundary
.... end ΣC 0..1 dateTime End time with inclusive boundary, if not ongoing
... study SΣ 1..1 Reference(ResearchStudy) Das Register, als ResearchStudy geführt
... individual SΣ 1..1 Reference(Patient) Who is part of study
... assignedArm 0..1 string What path should be followed
... actualArm 0..1 string What path was followed
... consent S 0..1 Reference(Consent) Nur zu setzen, wenn die Einwilligung am dokumentierenden Standort tatsaechlich als Ressource vorliegt

doco Documentation for this format

Terminology Bindings

Path Status Usage ValueSet Version Source
ResearchSubject.language Base preferred Common Languages 📍4.0.1 FHIR Std.
ResearchSubject.status Base required ResearchSubjectStatus 📍4.0.1 FHIR Std.

Constraints

Id Grade Path(s) Description Expression
dom-2 error ResearchSubject If the resource is contained in another resource, it SHALL NOT contain nested Resources contained.contained.empty()
dom-3 error ResearchSubject If the resource is contained in another resource, it SHALL be referred to from elsewhere in the resource or SHALL refer to the containing resource contained.where((('#'+id in (%resource.descendants().reference | %resource.descendants().as(canonical) | %resource.descendants().as(uri) | %resource.descendants().as(url))) or descendants().where(reference = '#').exists() or descendants().where(as(canonical) = '#').exists() or descendants().where(as(canonical) = '#').exists()).not()).trace('unmatched', id).empty()
dom-4 error ResearchSubject If a resource is contained in another resource, it SHALL NOT have a meta.versionId or a meta.lastUpdated contained.meta.versionId.empty() and contained.meta.lastUpdated.empty()
dom-5 error ResearchSubject If a resource is contained in another resource, it SHALL NOT have a security label contained.meta.security.empty()
dom-6 best practice ResearchSubject A resource should have narrative for robust management text.`div`.exists()
ele-1 error **ALL** elements All FHIR elements must have a @value or children hasValue() or (children().count() > id.count())
ext-1 error **ALL** extensions Must have either extensions or value[x], not both extension.exists() != value.exists()

Summary

Must-Support: 8 elements

Extensions

This structure refers to these extensions:

Key Elements View

NameFlagsCard.TypeDescription & Constraints    Filter: Filtersdoco
.. ResearchSubject 0..* ResearchSubject Physical entity which is the primary unit of interest in the study
... implicitRules ?!Σ 0..1 uri A set of rules under which this content was created
... Slices for extension 0..* Extension Extension
Slice: Unordered, Open by value:url
.... extension:register S 0..1 Reference(Library) Katalogeintrag des Registers als Library (optional)
URL: https://www.medizininformatik-initiative.de/fhir/ext/modul-seltene/StructureDefinition/mii-ex-seltene-register
... modifierExtension ?! 0..* Extension Extensions that cannot be ignored
... status ?!SΣ 1..1 code Status der Teilnahme
Binding: ResearchSubjectStatus (required): Indicates the progression of a study subject through a study.
... period SΣ 0..1 Period Zeitraum der Registerteilnahme
.... start SΣC 0..1 dateTime Starting time with inclusive boundary
... study SΣ 1..1 Reference(ResearchStudy) Das Register, als ResearchStudy geführt
... individual SΣ 1..1 Reference(Patient) Who is part of study
... consent S 0..1 Reference(Consent) Nur zu setzen, wenn die Einwilligung am dokumentierenden Standort tatsaechlich als Ressource vorliegt

doco Documentation for this format

Terminology Bindings

Path Status Usage ValueSet Version Source
ResearchSubject.status Base required ResearchSubjectStatus 📍4.0.1 FHIR Std.

Constraints

Id Grade Path(s) Description Expression
dom-2 error ResearchSubject If the resource is contained in another resource, it SHALL NOT contain nested Resources contained.contained.empty()
dom-3 error ResearchSubject If the resource is contained in another resource, it SHALL be referred to from elsewhere in the resource or SHALL refer to the containing resource contained.where((('#'+id in (%resource.descendants().reference | %resource.descendants().as(canonical) | %resource.descendants().as(uri) | %resource.descendants().as(url))) or descendants().where(reference = '#').exists() or descendants().where(as(canonical) = '#').exists() or descendants().where(as(canonical) = '#').exists()).not()).trace('unmatched', id).empty()
dom-4 error ResearchSubject If a resource is contained in another resource, it SHALL NOT have a meta.versionId or a meta.lastUpdated contained.meta.versionId.empty() and contained.meta.lastUpdated.empty()
dom-5 error ResearchSubject If a resource is contained in another resource, it SHALL NOT have a security label contained.meta.security.empty()
dom-6 best practice ResearchSubject A resource should have narrative for robust management text.`div`.exists()
ele-1 error **ALL** elements All FHIR elements must have a @value or children hasValue() or (children().count() > id.count())
ext-1 error **ALL** extensions Must have either extensions or value[x], not both extension.exists() != value.exists()

Differential View

NameFlagsCard.TypeDescription & Constraints    Filter: Filtersdoco
.. ResearchSubject 0..* ResearchSubject Physical entity which is the primary unit of interest in the study
... Slices for extension 0..* Extension Extension
Slice: Unordered, Open by value:url
.... extension:register S 0..1 Reference(Library) Katalogeintrag des Registers als Library (optional)
URL: https://www.medizininformatik-initiative.de/fhir/ext/modul-seltene/StructureDefinition/mii-ex-seltene-register
... identifier S 0..1 Identifier Pseudonym der Person im Register
... status S 1..1 code Status der Teilnahme
.... start S 0..1 dateTime Starting time with inclusive boundary
... study S 1..1 Reference(ResearchStudy) Das Register, als ResearchStudy geführt
... individual S 1..1 Reference(Patient) Who is part of study
... consent S 0..1 Reference(Consent) Nur zu setzen, wenn die Einwilligung am dokumentierenden Standort tatsaechlich als Ressource vorliegt

doco Documentation for this format

Snapshot ViewView

NameFlagsCard.TypeDescription & Constraints    Filter: Filtersdoco
.. ResearchSubject 0..* ResearchSubject Physical entity which is the primary unit of interest in the study
... id Σ 0..1 id Logical id of this artifact
... meta Σ 0..1 Meta Metadata about the resource
... implicitRules ?!Σ 0..1 uri A set of rules under which this content was created
... text 0..1 Narrative Text summary of the resource, for human interpretation
This profile does not constrain the narrative in regard to content, language, or traceability to data elements
... contained 0..* Resource Contained, inline Resources
... Slices for extension 0..* Extension Extension
Slice: Unordered, Open by value:url
.... extension:register S 0..1 Reference(Library) Katalogeintrag des Registers als Library (optional)
URL: https://www.medizininformatik-initiative.de/fhir/ext/modul-seltene/StructureDefinition/mii-ex-seltene-register
... modifierExtension ?! 0..* Extension Extensions that cannot be ignored
... identifier SΣ 0..1 Identifier Pseudonym der Person im Register
... status ?!SΣ 1..1 code Status der Teilnahme
Binding: ResearchSubjectStatus (required): Indicates the progression of a study subject through a study.
... period SΣ 0..1 Period Zeitraum der Registerteilnahme
.... id 0..1 string Unique id for inter-element referencing
.... extension 0..* Extension Additional content defined by implementations
Slice: Unordered, Open by value:url
.... start SΣC 0..1 dateTime Starting time with inclusive boundary
.... end ΣC 0..1 dateTime End time with inclusive boundary, if not ongoing
... study SΣ 1..1 Reference(ResearchStudy) Das Register, als ResearchStudy geführt
... individual SΣ 1..1 Reference(Patient) Who is part of study
... assignedArm 0..1 string What path should be followed
... actualArm 0..1 string What path was followed
... consent S 0..1 Reference(Consent) Nur zu setzen, wenn die Einwilligung am dokumentierenden Standort tatsaechlich als Ressource vorliegt

doco Documentation for this format

Terminology Bindings

Path Status Usage ValueSet Version Source
ResearchSubject.language Base preferred Common Languages 📍4.0.1 FHIR Std.
ResearchSubject.status Base required ResearchSubjectStatus 📍4.0.1 FHIR Std.

Constraints

Id Grade Path(s) Description Expression
dom-2 error ResearchSubject If the resource is contained in another resource, it SHALL NOT contain nested Resources contained.contained.empty()
dom-3 error ResearchSubject If the resource is contained in another resource, it SHALL be referred to from elsewhere in the resource or SHALL refer to the containing resource contained.where((('#'+id in (%resource.descendants().reference | %resource.descendants().as(canonical) | %resource.descendants().as(uri) | %resource.descendants().as(url))) or descendants().where(reference = '#').exists() or descendants().where(as(canonical) = '#').exists() or descendants().where(as(canonical) = '#').exists()).not()).trace('unmatched', id).empty()
dom-4 error ResearchSubject If a resource is contained in another resource, it SHALL NOT have a meta.versionId or a meta.lastUpdated contained.meta.versionId.empty() and contained.meta.lastUpdated.empty()
dom-5 error ResearchSubject If a resource is contained in another resource, it SHALL NOT have a security label contained.meta.security.empty()
dom-6 best practice ResearchSubject A resource should have narrative for robust management text.`div`.exists()
ele-1 error **ALL** elements All FHIR elements must have a @value or children hasValue() or (children().count() > id.count())
ext-1 error **ALL** extensions Must have either extensions or value[x], not both extension.exists() != value.exists()

Summary

Must-Support: 8 elements

Extensions

This structure refers to these extensions:

 

Other representations of profile: CSV, Excel, Schematron