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HdBe-FamilyHistory

WARNING This page contains a draft CBB, as raw output from the zib export and automatic conversion to CBB. It requires thorough review and adaption to the Belgian realm. This CBB is merely added for informative use.

CBB	Description	Status
HdBe-FamilyHistory	The family history describes any health problems of biological relatives that may be relevant. The family history contains information on the medical disorders of the family member and the biological relationship between the patient and the described family member. Purpose Recording the patient’s family members’ health problems. This component can be relevant in estimating the risk of these health problems occurring in the patient. This component can also partially influence the decision determining which diagnostics are or are not to be run: a high-risk patient might be more likely to receive extensive diagnostics, while a simpler test could suffice for a low-risk patient. Instructions The age at which a family member developed a disorder or the age at which the family member died can be included in the ‘explanation’ field if desired. The value list BiologicalRelationshipCodeList contains a number of concepts which can be used for both biological and non-biological relatives: a step-father’s brother can be listed as an uncle for lack of specific codes for step-uncle and real uncles. Therefore, when compiling the family history, make sure that only the biological relatives are considered.	draft

CBB

Description

Status

HdBe-FamilyHistory

The family history describes any health problems of biological relatives that may be relevant. The family history contains information on the medical disorders of the family member and the biological relationship between the patient and the described family member.

Purpose

Recording the patient’s family members’ health problems. This component can be relevant in estimating the risk of these health problems occurring in the patient. This component can also partially influence the decision determining which diagnostics are or are not to be run: a high-risk patient might be more likely to receive extensive diagnostics, while a simpler test could suffice for a low-risk patient.

Instructions

The age at which a family member developed a disorder or the age at which the family member died can be included in the ‘explanation’ field if desired.

The value list BiologicalRelationshipCodeList contains a number of concepts which can be used for both biological and non-biological relatives: a step-father’s brother can be listed as an uncle for lack of specific codes for step-uncle and real uncles. Therefore, when compiling the family history, make sure that only the biological relatives are considered.

draft

FamilyHistory			FamilyHistory	Element id FamilyHistory Short description FamilyHistory Definition Root concept of the FamilyHistory information model. This root concept contains all data elements of the FamilyHistory information model. Data type FamilyHistory Constraints ele-1: All FHIR elements must have a @value or children `hasValue() or (children().count() > id.count())` Mappings rim: n/a
id		0..1	string	There are no (further) constraints on this element Element id FamilyHistory.id Short description Unique id for inter-element referencing Definition Unique id for the element within a resource (for internal references). This may be any string value that does not contain spaces. Data type string Mappings rim: n/a
extension	I	0..*	Extension	There are no (further) constraints on this element Element id FamilyHistory.extension Short description Additional content defined by implementations Alternate names extensions, user content Definition May be used to represent additional information that is not part of the basic definition of the element. To make the use of extensions safe and manageable, there is a strict set of governance applied to the definition and use of extensions. Though any implementer can define an extension, there is a set of requirements that SHALL be met as part of the definition of the extension. Comments There can be no stigma associated with the use of extensions by any application, project, or standard - regardless of the institution or jurisdiction that uses or defines the extensions. The use of extensions is what allows the FHIR specification to retain a core level of simplicity for everyone. Data type Extension Sliced: Unordered, Open, by url(Value) Extensions are always sliced by (at least) url Constraints ele-1: All FHIR elements must have a @value or children `hasValue() or (children().count() > id.count())` ext-1: Must have either extensions or value[x], not both `extension.exists() != value.exists()` Mappings rim: n/a rim: N/A
Date		0..1	dateTime	Element id FamilyHistory.Date Short description Date Definition Date on which the family history was entered. A ‘vague’ date is permitted. Data type dateTime Constraints ele-1: All FHIR elements must have a @value or children `hasValue() or (children().count() > id.count())` Mappings rim: n/a
FamilyMember		1..*	BackboneElement	Element id FamilyHistory.FamilyMember Short description FamilyMember Definition Container of the FamilyMember concept. This container contains all data elements of the FamilyMember concept. Data type BackboneElement Constraints ele-1: All FHIR elements must have a @value or children `hasValue() or (children().count() > id.count())` Mappings rim: n/a
id		0..1	string	There are no (further) constraints on this element Element id FamilyHistory.FamilyMember.id Short description Unique id for inter-element referencing Definition Unique id for the element within a resource (for internal references). This may be any string value that does not contain spaces. Data type string Mappings rim: n/a
extension	I	0..*	Extension	There are no (further) constraints on this element Element id FamilyHistory.FamilyMember.extension Short description Additional content defined by implementations Alternate names extensions, user content Definition May be used to represent additional information that is not part of the basic definition of the element. To make the use of extensions safe and manageable, there is a strict set of governance applied to the definition and use of extensions. Though any implementer can define an extension, there is a set of requirements that SHALL be met as part of the definition of the extension. Comments There can be no stigma associated with the use of extensions by any application, project, or standard - regardless of the institution or jurisdiction that uses or defines the extensions. The use of extensions is what allows the FHIR specification to retain a core level of simplicity for everyone. Data type Extension Sliced: Unordered, Open, by url(Value) Extensions are always sliced by (at least) url Constraints ele-1: All FHIR elements must have a @value or children `hasValue() or (children().count() > id.count())` ext-1: Must have either extensions or value[x], not both `extension.exists() != value.exists()` Mappings rim: n/a rim: N/A
modifierExtension	Σ ?! I	0..*	Extension	There are no (further) constraints on this element Element id FamilyHistory.FamilyMember.modifierExtension Short description Extensions that cannot be ignored even if unrecognized Alternate names extensions, user content, modifiers Definition May be used to represent additional information that is not part of the basic definition of the element and that modifies the understanding of the element in which it is contained and/or the understanding of the containing element's descendants. Usually modifier elements provide negation or qualification. To make the use of extensions safe and manageable, there is a strict set of governance applied to the definition and use of extensions. Though any implementer can define an extension, there is a set of requirements that SHALL be met as part of the definition of the extension. Applications processing a resource are required to check for modifier extensions. Modifier extensions SHALL NOT change the meaning of any elements on Resource or DomainResource (including cannot change the meaning of modifierExtension itself). Requirements Modifier extensions allow for extensions that cannot be safely ignored to be clearly distinguished from the vast majority of extensions which can be safely ignored. This promotes interoperability by eliminating the need for implementers to prohibit the presence of extensions. For further information, see the definition of modifier extensions. Comments There can be no stigma associated with the use of extensions by any application, project, or standard - regardless of the institution or jurisdiction that uses or defines the extensions. The use of extensions is what allows the FHIR specification to retain a core level of simplicity for everyone. Data type Extension Constraints ele-1: All FHIR elements must have a @value or children `hasValue() or (children().count() > id.count())` ext-1: Must have either extensions or value[x], not both `extension.exists() != value.exists()` Mappings rim: n/a rim: N/A
BiologicalRelationship		1..1	CodeableConceptBinding	Element id FamilyHistory.FamilyMember.BiologicalRelationship Short description BiologicalRelationship Definition Indicates the biological relationship of the family member to the patient. Comments Not all terminology uses fit this general pattern. In some cases, models should not use CodeableConcept and use Coding directly and provide their own structure for managing text, codings, translations and the relationship between elements and pre- and post-coordination. Data type CodeableConcept Binding BiologicalRelationship codes BiologicalRelationship (extensible) Constraints ele-1: All FHIR elements must have a @value or children `hasValue() or (children().count() > id.count())` Mappings rim: n/a v2: CE/CNE/CWE rim: CD orim: fhir:CodeableConcept rdfs:subClassOf dt:CD
Comment		0..1	string	Element id FamilyHistory.FamilyMember.Comment Short description Comment Definition Comment with information on the family member which might be relevant to the family history. Comments Note that FHIR strings SHALL NOT exceed 1MB in size Data type string Constraints ele-1: All FHIR elements must have a @value or children `hasValue() or (children().count() > id.count())` Mappings rim: n/a
DeathIndicator		0..1	boolean	Element id FamilyHistory.FamilyMember.DeathIndicator Short description DeathIndicator Definition An indication stating whether the family member has died. Data type boolean Constraints ele-1: All FHIR elements must have a @value or children `hasValue() or (children().count() > id.count())` Mappings rim: n/a
AgeAtDeath		0..1	positiveInt	Element id FamilyHistory.FamilyMember.AgeAtDeath Short description AgeAtDeath Definition The age at which the family member died. Comments 32 bit number; for values larger than this, use decimal Data type positiveInt Constraints ele-1: All FHIR elements must have a @value or children `hasValue() or (children().count() > id.count())` Mappings rim: n/a
Disorder		1..*	BackboneElement	Element id FamilyHistory.FamilyMember.Disorder Short description Disorder Definition Container of the Disorder concept. This container contains all data elements of the Disorder concept. Data type BackboneElement Constraints ele-1: All FHIR elements must have a @value or children `hasValue() or (children().count() > id.count())` Mappings rim: n/a
id		0..1	string	There are no (further) constraints on this element Element id FamilyHistory.FamilyMember.Disorder.id Short description Unique id for inter-element referencing Definition Unique id for the element within a resource (for internal references). This may be any string value that does not contain spaces. Data type string Mappings rim: n/a
extension	I	0..*	Extension	There are no (further) constraints on this element Element id FamilyHistory.FamilyMember.Disorder.extension Short description Additional content defined by implementations Alternate names extensions, user content Definition May be used to represent additional information that is not part of the basic definition of the element. To make the use of extensions safe and manageable, there is a strict set of governance applied to the definition and use of extensions. Though any implementer can define an extension, there is a set of requirements that SHALL be met as part of the definition of the extension. Comments There can be no stigma associated with the use of extensions by any application, project, or standard - regardless of the institution or jurisdiction that uses or defines the extensions. The use of extensions is what allows the FHIR specification to retain a core level of simplicity for everyone. Data type Extension Sliced: Unordered, Open, by url(Value) Extensions are always sliced by (at least) url Constraints ele-1: All FHIR elements must have a @value or children `hasValue() or (children().count() > id.count())` ext-1: Must have either extensions or value[x], not both `extension.exists() != value.exists()` Mappings rim: n/a rim: N/A
modifierExtension	Σ ?! I	0..*	Extension	There are no (further) constraints on this element Element id FamilyHistory.FamilyMember.Disorder.modifierExtension Short description Extensions that cannot be ignored even if unrecognized Alternate names extensions, user content, modifiers Definition May be used to represent additional information that is not part of the basic definition of the element and that modifies the understanding of the element in which it is contained and/or the understanding of the containing element's descendants. Usually modifier elements provide negation or qualification. To make the use of extensions safe and manageable, there is a strict set of governance applied to the definition and use of extensions. Though any implementer can define an extension, there is a set of requirements that SHALL be met as part of the definition of the extension. Applications processing a resource are required to check for modifier extensions. Modifier extensions SHALL NOT change the meaning of any elements on Resource or DomainResource (including cannot change the meaning of modifierExtension itself). Requirements Modifier extensions allow for extensions that cannot be safely ignored to be clearly distinguished from the vast majority of extensions which can be safely ignored. This promotes interoperability by eliminating the need for implementers to prohibit the presence of extensions. For further information, see the definition of modifier extensions. Comments There can be no stigma associated with the use of extensions by any application, project, or standard - regardless of the institution or jurisdiction that uses or defines the extensions. The use of extensions is what allows the FHIR specification to retain a core level of simplicity for everyone. Data type Extension Constraints ele-1: All FHIR elements must have a @value or children `hasValue() or (children().count() > id.count())` ext-1: Must have either extensions or value[x], not both `extension.exists() != value.exists()` Mappings rim: n/a rim: N/A
Problem	I	1..1	Reference(HdBe-Problem)	Element id FamilyHistory.FamilyMember.Disorder.Problem Short description Problem Definition The health problem of the family member in question, which is recorded for the family history. Comments References SHALL be a reference to an actual FHIR resource, and SHALL be resolveable (allowing for access control, temporary unavailability, etc.). Resolution can be either by retrieval from the URL, or, where applicable by resource type, by treating an absolute reference as a canonical URL and looking it up in a local registry/repository. Data type Reference(HdBe-Problem) Constraints ele-1: All FHIR elements must have a @value or children `hasValue() or (children().count() > id.count())` ref-1: SHALL have a contained resource if a local reference is provided `reference.startsWith('#').not() or (reference.substring(1).trace('url') in %rootResource.contained.id.trace('ids'))` Mappings rim: n/a rim: The target of a resource reference is a RIM entry point (Act, Role, or Entity)
IsCauseOfDeath		0..1	boolean	Element id FamilyHistory.FamilyMember.Disorder.IsCauseOfDeath Short description IsCauseOfDeath Definition Indication stating whether the described health problem was the cause of death of the family member. Data type boolean Constraints ele-1: All FHIR elements must have a @value or children `hasValue() or (children().count() > id.count())` Mappings rim: n/a

FamilyHistory		0..*
FamilyHistory.Date	dateTime	0..1
FamilyHistory.FamilyMember	BackboneElement	1..*
FamilyHistory.FamilyMember.BiologicalRelationship	CodeableConcept	1..1
FamilyHistory.FamilyMember.Comment	string	0..1
FamilyHistory.FamilyMember.DeathIndicator	boolean	0..1
FamilyHistory.FamilyMember.AgeAtDeath	positiveInt	0..1
FamilyHistory.FamilyMember.Disorder	BackboneElement	1..*
FamilyHistory.FamilyMember.Disorder.Problem	Reference(HdBe-Problem)	1..1
FamilyHistory.FamilyMember.Disorder.IsCauseOfDeath	boolean	0..1

FamilyHistory
Definition	Root concept of the FamilyHistory information model. This root concept contains all data elements of the FamilyHistory information model.
Cardinality	0...*
Invariants	ele-1: All FHIR elements must have a @value or children `hasValue() or (children().count() > id.count())`
Mappings	rim: n/a
FamilyHistory.id
Definition	Unique id for the element within a resource (for internal references). This may be any string value that does not contain spaces.
Cardinality	0...1
Type	string
Mappings	rim: n/a
FamilyHistory.extension
Definition	May be used to represent additional information that is not part of the basic definition of the element. To make the use of extensions safe and manageable, there is a strict set of governance applied to the definition and use of extensions. Though any implementer can define an extension, there is a set of requirements that SHALL be met as part of the definition of the extension.
Cardinality	0...*
Type	Extension
Alias	extensions, user content
Comments	There can be no stigma associated with the use of extensions by any application, project, or standard - regardless of the institution or jurisdiction that uses or defines the extensions. The use of extensions is what allows the FHIR specification to retain a core level of simplicity for everyone.
Slicing	Unordered, Open, by url(Value)
Invariants	ele-1: All FHIR elements must have a @value or children `hasValue() or (children().count() > id.count())` ext-1: Must have either extensions or value[x], not both `extension.exists() != value.exists()`
Mappings	rim: n/a rim: N/A
FamilyHistory.Date
Definition	Date on which the family history was entered. A ‘vague’ date is permitted.
Cardinality	0...1
Type	dateTime
Invariants	ele-1: All FHIR elements must have a @value or children `hasValue() or (children().count() > id.count())`
Mappings	rim: n/a
FamilyHistory.FamilyMember
Definition	Container of the FamilyMember concept. This container contains all data elements of the FamilyMember concept.
Cardinality	1...*
Type	BackboneElement
Invariants	ele-1: All FHIR elements must have a @value or children `hasValue() or (children().count() > id.count())`
Mappings	rim: n/a
FamilyHistory.FamilyMember.id
Definition	Unique id for the element within a resource (for internal references). This may be any string value that does not contain spaces.
Cardinality	0...1
Type	string
Mappings	rim: n/a
FamilyHistory.FamilyMember.extension
Definition	May be used to represent additional information that is not part of the basic definition of the element. To make the use of extensions safe and manageable, there is a strict set of governance applied to the definition and use of extensions. Though any implementer can define an extension, there is a set of requirements that SHALL be met as part of the definition of the extension.
Cardinality	0...*
Type	Extension
Alias	extensions, user content
Comments	There can be no stigma associated with the use of extensions by any application, project, or standard - regardless of the institution or jurisdiction that uses or defines the extensions. The use of extensions is what allows the FHIR specification to retain a core level of simplicity for everyone.
Slicing	Unordered, Open, by url(Value)
Invariants	ele-1: All FHIR elements must have a @value or children `hasValue() or (children().count() > id.count())` ext-1: Must have either extensions or value[x], not both `extension.exists() != value.exists()`
Mappings	rim: n/a rim: N/A
FamilyHistory.FamilyMember.modifierExtension
Definition	May be used to represent additional information that is not part of the basic definition of the element and that modifies the understanding of the element in which it is contained and/or the understanding of the containing element's descendants. Usually modifier elements provide negation or qualification. To make the use of extensions safe and manageable, there is a strict set of governance applied to the definition and use of extensions. Though any implementer can define an extension, there is a set of requirements that SHALL be met as part of the definition of the extension. Applications processing a resource are required to check for modifier extensions. Modifier extensions SHALL NOT change the meaning of any elements on Resource or DomainResource (including cannot change the meaning of modifierExtension itself).
Cardinality	0...*
Type	Extension
Modifier	True
Summary	True
Alias	extensions, user content, modifiers
Requirements	Modifier extensions allow for extensions that cannot be safely ignored to be clearly distinguished from the vast majority of extensions which can be safely ignored. This promotes interoperability by eliminating the need for implementers to prohibit the presence of extensions. For further information, see the definition of modifier extensions.
Comments	There can be no stigma associated with the use of extensions by any application, project, or standard - regardless of the institution or jurisdiction that uses or defines the extensions. The use of extensions is what allows the FHIR specification to retain a core level of simplicity for everyone.
Invariants	ele-1: All FHIR elements must have a @value or children `hasValue() or (children().count() > id.count())` ext-1: Must have either extensions or value[x], not both `extension.exists() != value.exists()`
Mappings	rim: n/a rim: N/A
FamilyHistory.FamilyMember.BiologicalRelationship
Definition	Indicates the biological relationship of the family member to the patient.
Cardinality	1...1
Type	CodeableConcept
Binding	BiologicalRelationship codes BiologicalRelationship (extensible)
Comments	Not all terminology uses fit this general pattern. In some cases, models should not use CodeableConcept and use Coding directly and provide their own structure for managing text, codings, translations and the relationship between elements and pre- and post-coordination.
Invariants	ele-1: All FHIR elements must have a @value or children `hasValue() or (children().count() > id.count())`
Mappings	rim: n/a v2: CE/CNE/CWE rim: CD orim: fhir:CodeableConcept rdfs:subClassOf dt:CD
FamilyHistory.FamilyMember.Comment
Definition	Comment with information on the family member which might be relevant to the family history.
Cardinality	0...1
Type	string
Comments	Note that FHIR strings SHALL NOT exceed 1MB in size
Invariants	ele-1: All FHIR elements must have a @value or children `hasValue() or (children().count() > id.count())`
Mappings	rim: n/a
FamilyHistory.FamilyMember.DeathIndicator
Definition	An indication stating whether the family member has died.
Cardinality	0...1
Type	boolean
Invariants	ele-1: All FHIR elements must have a @value or children `hasValue() or (children().count() > id.count())`
Mappings	rim: n/a
FamilyHistory.FamilyMember.AgeAtDeath
Definition	The age at which the family member died.
Cardinality	0...1
Type	positiveInt
Comments	32 bit number; for values larger than this, use decimal
Invariants	ele-1: All FHIR elements must have a @value or children `hasValue() or (children().count() > id.count())`
Mappings	rim: n/a
FamilyHistory.FamilyMember.Disorder
Definition	Container of the Disorder concept. This container contains all data elements of the Disorder concept.
Cardinality	1...*
Type	BackboneElement
Invariants	ele-1: All FHIR elements must have a @value or children `hasValue() or (children().count() > id.count())`
Mappings	rim: n/a
FamilyHistory.FamilyMember.Disorder.id
Definition	Unique id for the element within a resource (for internal references). This may be any string value that does not contain spaces.
Cardinality	0...1
Type	string
Mappings	rim: n/a
FamilyHistory.FamilyMember.Disorder.extension
Definition	May be used to represent additional information that is not part of the basic definition of the element. To make the use of extensions safe and manageable, there is a strict set of governance applied to the definition and use of extensions. Though any implementer can define an extension, there is a set of requirements that SHALL be met as part of the definition of the extension.
Cardinality	0...*
Type	Extension
Alias	extensions, user content
Comments	There can be no stigma associated with the use of extensions by any application, project, or standard - regardless of the institution or jurisdiction that uses or defines the extensions. The use of extensions is what allows the FHIR specification to retain a core level of simplicity for everyone.
Slicing	Unordered, Open, by url(Value)
Invariants	ele-1: All FHIR elements must have a @value or children `hasValue() or (children().count() > id.count())` ext-1: Must have either extensions or value[x], not both `extension.exists() != value.exists()`
Mappings	rim: n/a rim: N/A
FamilyHistory.FamilyMember.Disorder.modifierExtension
Definition	May be used to represent additional information that is not part of the basic definition of the element and that modifies the understanding of the element in which it is contained and/or the understanding of the containing element's descendants. Usually modifier elements provide negation or qualification. To make the use of extensions safe and manageable, there is a strict set of governance applied to the definition and use of extensions. Though any implementer can define an extension, there is a set of requirements that SHALL be met as part of the definition of the extension. Applications processing a resource are required to check for modifier extensions. Modifier extensions SHALL NOT change the meaning of any elements on Resource or DomainResource (including cannot change the meaning of modifierExtension itself).
Cardinality	0...*
Type	Extension
Modifier	True
Summary	True
Alias	extensions, user content, modifiers
Requirements	Modifier extensions allow for extensions that cannot be safely ignored to be clearly distinguished from the vast majority of extensions which can be safely ignored. This promotes interoperability by eliminating the need for implementers to prohibit the presence of extensions. For further information, see the definition of modifier extensions.
Comments	There can be no stigma associated with the use of extensions by any application, project, or standard - regardless of the institution or jurisdiction that uses or defines the extensions. The use of extensions is what allows the FHIR specification to retain a core level of simplicity for everyone.
Invariants	ele-1: All FHIR elements must have a @value or children `hasValue() or (children().count() > id.count())` ext-1: Must have either extensions or value[x], not both `extension.exists() != value.exists()`
Mappings	rim: n/a rim: N/A
FamilyHistory.FamilyMember.Disorder.Problem
Definition	The health problem of the family member in question, which is recorded for the family history.
Cardinality	1...1
Type	Reference(HdBe-Problem)
Comments	References SHALL be a reference to an actual FHIR resource, and SHALL be resolveable (allowing for access control, temporary unavailability, etc.). Resolution can be either by retrieval from the URL, or, where applicable by resource type, by treating an absolute reference as a canonical URL and looking it up in a local registry/repository.
Invariants	ele-1: All FHIR elements must have a @value or children `hasValue() or (children().count() > id.count())` ref-1: SHALL have a contained resource if a local reference is provided `reference.startsWith('#').not() or (reference.substring(1).trace('url') in %rootResource.contained.id.trace('ids'))`
Mappings	rim: n/a rim: The target of a resource reference is a RIM entry point (Act, Role, or Entity)
FamilyHistory.FamilyMember.Disorder.IsCauseOfDeath
Definition	Indication stating whether the described health problem was the cause of death of the family member.
Cardinality	0...1
Type	boolean
Invariants	ele-1: All FHIR elements must have a @value or children `hasValue() or (children().count() > id.count())`
Mappings	rim: n/a

Example instances

[CBB name]
[Concept name ]	[example value]

// example of NameInformation

## Example instances

| NameInformation      |                   |
|----------------------|-------------------|
| FirstNames | Johanna Petronella Maria   
| Initials | J.P.M. 
| GivenName | Jo 
| NameUsage | Geslachtsnaam partner gevolgd door eigen geslachtsnaam
| LastName.Prefix | van
| LastName.LastName | Putten
| LastNamePartner.PartnerPrefix | van der
| LastNamePartner.PartnerLastName | Giessen
| Titles |

zib [zib name + version](https://zibs.nl/wiki/[zib name + version(release)]) difference

Concept	Category	Description
`[element.path]`	[category of change]	[Description of change]([Reference to ticket/issue/zulip chat using MarkDown link])

Terminology Bindings

Path	Name	Strength	URL
FamilyMember.BiologicalRelationship	BiologicalRelationship	extensible	https://fhir.healthdata.be/ValueSet/BiologicalRelationship