CARE-SM CSV Glossary Documentation
CARE-SM implements a CSV template structure to populate patient registry information. This template consists of a defined set of columns used across different data model modules. Depending on the specific module, a subset of these columns may be required, optional, or not applicable.
CSV template columns
The following table is the complete list of available columns:
Name |
Datatype |
Description |
|---|---|---|
|
Literal (string) |
Tag name used to identify the specific model to generate. |
|
Literal (integer) |
Patient unique identifier. |
|
Literal (integer) |
Event-specific identifier used to contextualize several data elements under the same medical visit or encounter. |
|
Literal (string, number, or date) |
Lexical value of this data element. |
|
Literal (string) |
Additional metadata of the |
|
IRI |
Full conceptual IRI describing a specific process associated with this data element, such as a clinical method or route of administration. |
|
IRI |
Full conceptual IRI describing the data element’s unit of measurement. |
|
IRI |
Full conceptual IRI defining any input associated with the clinical procedure, such as a medication used or a related tissue sample. |
|
IRI |
Full conceptual IRI defining any target associated with the clinical procedure, such as an anatomical structure or a molecule. |
|
IRI |
Full conceptual IRI specifying any protocol or document that contextualizes the reported data element. |
|
Literal (ISO 8601 duration |
Duration value, for instance, P10Y . it will be datatyped as |
|
Literal (ISO 8601 date) |
Start date of the duration time interval. |
|
Literal (ISO 8601 date) |
End date of the duration interval. |
|
IRI |
Full conceptual IRI defining the frequency type of the associated clinical procedure. |
|
Literal (string) |
Numerical frequency value; combined with |
|
Literal (ISO 8601 date) |
Start date of the data registration or time instant when the observation was taken. If identical to |
|
Literal (ISO 8601 date) |
End date of the data registration, if it ‘s different from |
|
Literal (integer) |
Age of the patient at the time of observation. |
|
Literal (string) |
Human-readable comments or descriptions related to this data element. |
|
IRI |
IRI used to define the organisation identifier. |
|
Literal (string) |
Lexical identifier value for a specific attribute, e.g. a sequence variant’s HGVS notation. Rows sharing the same |
|
Literal (string) |
Literal value carried by the input, when |
|
IRI |
Full conceptual IRI for a per-record attribute annotation, e.g. sex, participation status, or the examined finding. Direct, model-specific meaning – see the glossary entry for the model in question. |
|
IRI |
Full conceptual IRI classifying the output/record itself, e.g. the type of medication record or consent statement, when that classification varies per record rather than being fixed for the whole model. |
|
IRI |
Full IRI identifying the record’s own output, e.g. a biobank collection or country-of-birth code, when the output itself needs an external identifier. |
|
IRI |
Full conceptual IRI for a causally-related annotation, e.g. cause of death. |
CSV template creation
This guide explains how to structure, populate, and utilize CSV files for patient data in CARE-SM.
Create the CSV File
This document would only allow a set of concrete columns names:
model,pid,event_id,value,age,value_datatype,activity,unit,input,target,protocol_id,frequency_type,frequency_value,startdate,enddate,comments,organisation,duration_value,duration_startdate,duration_enddate,identifier_value,input_value,attribute_type,output_type,output_id,cause_id.
Example:
model,pid,event_id,value,age,value_datatype,activity,unit,input,target,protocol_id,frequency_type,frequency_value,startdate,enddate,comments,organisation,duration_value,duration_startdate,duration_enddate,identifier_value,input_value,attribute_type,output_type,output_id,cause_id ,,,,,,,,,,,,,,,,,,,,,,,,,,
Populate Data
Each data entry needs specific fields (not all fields are mandatory). See the glossary below for details.Example:
model,pid,event_id,target,value,value_datatype,startdate Diagnosis,30056,,http://www.orpha.net/ORDO/Orphanet_93552,true,xsd:boolean,2006-01-19
For more examples, refer to the
exemplar_datafolder.
Data Element Glossary
Legend:
This column is MANDATORY for this case.
This column is OPTIONAL. for this case
This column is NOT APPLICABLE for this case.
Birthdate
This data element can be queried (in an aggregated and anonymized manner) through the Beacon API developed for CARE-SM. For more information, click here
model: Birthdate
pid: Patient Unique Identifier.
value: ISO 8601-formatted birthdate.
value_datatype:
activity:
unit:
input:
target:
frequency_type:
frequency_value:
startdate: ISO 8601-formatted start date of the data registration., could be the same of the value
enddate: ISO 8601-formatted end date of the data registration in case it is different from startdate.
age:
comments: Additional human-readable comments.
event_id: Visit occurrence identifier.
organisation:
protocol_id: IRI reference to any associated protocol.
duration_value:
duration_startdate:
duration_enddate:
identifier_value:
input_value:
attribute_type:
output_type:
output_id:
cause_id:
Birthyear
This data element can be queried (in an aggregated and anonymized manner) through the Beacon API developed for CARE-SM. For more information, click here
model: Birthdate
pid: Patient Unique Identifier.
value: The year (YYYY) in which a person was born.
value_datatype:
activity:
unit:
input:
target:
frequency_type:
frequency_value:
startdate: ISO 8601-formatted start date of the data registration.
enddate: ISO 8601-formatted end date of the data registration in case it is different from startdate.
age:
comments: Additional human-readable comments.
event_id: Visit occurrence identifier.
organisation:
protocol_id: IRI reference to any associated protocol.
duration_value:
duration_startdate:
duration_enddate:
identifier_value:
input_value:
attribute_type:
output_type:
output_id:
cause_id:
Birthplace
This data element can be queried (in an aggregated and anonymized manner) through the Beacon API developed for CARE-SM. For more information, click here
model: Birthplace
pid: Patient Unique Identifier.
value:
value_datatype:
activity:
unit:
input:
target:
frequency_type:
frequency_value:
startdate: ISO 8601-formatted start date of the data registration.
enddate: ISO 8601-formatted end date of the data registration in case it is different from startdate.
age:
comments: Additional human-readable comments.
event_id: Visit occurrence identifier.
organisation:
protocol_id: IRI reference to any associated protocol.
duration_value:
duration_startdate:
duration_enddate:
identifier_value:
input_value:
attribute_type:
output_type:
output_id: Full IRI used as the annotation code for the country of birth.
cause_id:
Deathdate
model: Deathdate
pid: Patient Unique Identifier.
value: ISO 8601-formatted date of death (not date time)
value_datatype:
activity:
unit:
input:
target:
frequency_type:
frequency_value:
startdate: ISO 8601-formatted start date of the data registration., could be the same of the value
enddate: ISO 8601-formatted end date of the data registration in case it is different from startdate.
age: The patient’s age at the time the observation was taken.
comments: Additional human-readable comments.
event_id: Visit occurrence identifier.
organisation:
protocol_id: IRI reference to any associated protocol.
duration_value:
duration_startdate:
duration_enddate:
identifier_value:
input_value:
attribute_type:
output_type:
output_id:
cause_id: Full concept IRI for the cause of death, when known.
Sex
This data element can be queried (in an aggregated and anonymized manner) through the Beacon API developed for CARE-SM. For more information, click here
model: Sex
pid: Patient Unique Identifier.
value: Human-readable label of the concept IRI used for attribute_type.
value_datatype:
activity:
unit:
input:
target:
frequency_type:
frequency_value:
startdate: ISO 8601-formatted start date of the data registration.
enddate: ISO 8601-formatted end date of the data registration in case it is different from startdate.
age:
comments: Additional human-readable comments.
event_id: Visit occurrence identifier.
organisation:
protocol_id: IRI reference to any associated protocol.
duration_value:
duration_startdate:
duration_enddate:
identifier_value:
input_value:
attribute_type: Full concept IRI for the patient sex annotation.
output_type:
output_id:
cause_id:
** If you are representing CARE-SM with the OBO Foundry, use the one of the following NCIT terms:
http://purl.obolibrary.org/obo/NCIT_C16576 (Female)
http://purl.obolibrary.org/obo/NCIT_C20197 (Male)
http://purl.obolibrary.org/obo/NCIT_C124294 (Undetermined)
http://purl.obolibrary.org/obo/NCIT_C17998 (Unknown)
First Confirmed Visit
model: First_visit
pid: Patient Unique Identifier.
value: ISO 8601-formatted date of first confirmed visit.
value_datatype:
activity:
unit:
input:
target:
frequency_type:
frequency_value:
startdate: ISO 8601-formatted start date of the data registration., could be the same of the value
enddate: ISO 8601-formatted end date of the data registration in case it is different from startdate.
age: The patient’s age at the time the observation was taken.
comments: Additional human-readable comments.
event_id: Visit occurrence identifier.
organisation:
protocol_id: IRI reference to any associated protocol.
duration_value:
duration_startdate:
duration_enddate:
identifier_value:
input_value:
attribute_type:
output_type:
output_id:
cause_id:
Participation status
model: Status
pid: Patient Unique Identifier.
value: Human-readable label of the concept IRI used for attribute_type.
value_datatype:
activity:
unit:
input:
target:
frequency_type:
frequency_value:
startdate: ISO 8601-formatted start date of the data registration.
enddate: ISO 8601-formatted end date of the data registration in case it is different from startdate.
age: The patient’s age at the time the observation was taken.
comments: Additional human-readable comments.
event_id: Visit occurrence identifier.
organisation:
protocol_id: IRI reference to any associated protocol.
duration_value:
duration_startdate:
duration_enddate:
identifier_value:
input_value:
attribute_type: Full concept IRI for the participation status annotation.
output_type:
output_id:
cause_id:
** If you are representing CARE-SM with the OBO Foundry, use the one of the following NCIT terms:
http://purl.obolibrary.org/obo/NCIT_C37987 (Alive)
http://purl.obolibrary.org/obo/NCIT_C90387 (Found Dead)
http://purl.obolibrary.org/obo/NCIT_C70740 (Subject Lost to Follow Up)
http://purl.obolibrary.org/obo/NCIT_C124784 (Refusal To Participate)
Symptoms onset
This data element can be queried (in an aggregated and anonymized manner) through the Beacon API developed for CARE-SM. For more information, click here
model: Symptoms_onset
pid: Patient Unique Identifier.
value: One of the following:
value_datatype:
activity:
unit:
input:
target: Full concept IRI for the particular symptom annotation.
frequency_type:
frequency_value:
startdate: ISO 8601-formatted start date of registration
enddate: ISO 8601-formatted end date of registration in case it is different from startdate.
age: The patient’s age at the time the observation was taken.
comments: Additional human-readable comments.
event_id: Visit occurrence identifier.
organisation:
protocol_id: IRI reference to any associated protocol.
duration_value:
duration_startdate:
duration_enddate:
identifier_value:
input_value:
attribute_type:
output_type:
output_id:
cause_id:Age of the symptoms onset.
ISO 8601-formatted date of the symptoms occurrence.
Phenotype
This data element can be queried (in an aggregated and anonymized manner) through the Beacon API developed for CARE-SM. For more information, click here
model: Phenotype
pid: Patient Unique Identifier.
value: Boolean result of the observation – trueif the phenotype was confirmed present,falseif it was explicitly tested for and confirmed absent.
value_datatype:
unit:
input:
target: Full concept IRI for the phenotype being tested (e.g. an HPO code). Together with value, forms the complete assertion: “was this phenotype observed?”
duration_value: ISO 8601 duration value of the phenotype duration interval, for instance, P10Y.
duration_startdate: ISO 8601 start date of the phenotype duration interval.
duration_enddate: ISO 8601 start date of the phenotype duration interval.
frequency_type:
frequency_value:
startdate: ISO 8601-formatted start date of the data registration.
enddate: ISO 8601-formatted end date of the data registration in case it is different from startdate.
age: The patient’s age at the time the observation was taken.
comments: Additional human-readable comments.
event_id: Visit occurrence identifier.
organisation:
protocol_id: IRI reference to any associated protocol.
activity:
identifier_value:
input_value:
attribute_type: Only present when valueistrue: mirrorstarget’s phenotype code, soAttribute_exists only for a confirmed-present finding.
output_type:
output_id:
cause_id:
Diagnosis
This data element can be queried (in an aggregated and anonymized manner) through the Beacon API developed for CARE-SM. For more information, click here
model: Diagnosis
pid: Patient Unique Identifier.
value: Boolean result of the observation – trueif the diagnosis was confirmed,falseif it was explicitly tested for and confirmed absent.
value_datatype:
activity:
unit:
input: Structural schema placeholder only, never populated via CSV – see the “Note on Process_ --has input--> Input_” in the Diagnosis diagram for why.
target: Full concept IRI for the disease or disorder being tested for (e.g. an ORPHA code). Together with value, forms the complete assertion: “was this diagnosis confirmed?”
frequency_type:
frequency_value:
startdate: ISO 8601-formatted start date of the data registration.
enddate: ISO 8601-formatted end date of the data registration in case it is different from startdate.
age: The patient’s age at the time the observation was taken.
comments: Additional human-readable comments.
event_id: Visit occurrence identifier.
organisation:
protocol_id: IRI reference to any associated protocol.
duration_value: ISO 8601 duration value of the diagnosis duration interval, for instance, P10Y.
duration_startdate: ISO 8601 start date of the diagnosis duration interval.
duration_enddate: ISO 8601 start date of the diagnosis duration interval.
identifier_value:
input_value:
attribute_type: Only present when valueistrue: mirrorstarget’s diagnosis code, soAttribute_exists only for a confirmed diagnosis.
output_type:
output_id:
cause_id:
Examination
model: Examination
pid: Patient Unique Identifier.
value: Resulting value from this examination.
value_datatype:
activity: Full concept IRI for the specific method activity.
unit: Full concept IRI for the unit of measurement.
input:
target: Full concept IRI for the anatomic structure examined.
frequency_type:
frequency_value:
startdate: ISO 8601-formatted start date of the data registration.
enddate: ISO 8601-formatted end date of the data registration in case it is different from startdate.
age: The patient’s age at the time the observation was taken.
comments: Additional human-readable comments.
event_id: Visit occurrence identifier.
organisation:
protocol_id: URL reference to any protocol.
duration_value:
duration_startdate:
duration_enddate:
identifier_value:
input_value:
attribute_type: Full concept IRI for the patient attribute/finding examined.
output_type:
output_id:
cause_id:
** If you are representing CARE-SM with the OBO Foundry, this is some example using NCIT terms:
http://purl.obolibrary.org/obo/NCIT_C25208 (Weight)
http://purl.obolibrary.org/obo/NCIT_C25347 (Height)
http://purl.obolibrary.org/obo/NCIT_C99524 (Left Ventricular Ejection Fraction)
http://purl.obolibrary.org/obo/NCIT_C16358 (Body Mass Index)
Laboratory
model: Laboratory
pid: Patient Unique Identifier.
value: value of the laboratory measurement.
value_datatype:
activity: Full concept IRI for the specific method annotation.
unit: Full concept IRI for the unit of measurement.
input: Full concept IRI for the substance sample analysed.
target: Full concept IRI for the compound measured in the sample.
frequency_type:
frequency_value:
startdate: ISO 8601-formatted start date of the data registration.
enddate: ISO 8601-formatted end date of the data registration in case it is different from startdate.
age: The patient’s age at the time the observation was taken.
comments: Additional human-readable comments.
event_id: Visit occurrence identifier.
organisation:
protocol_id: URL reference to a protocol.
duration_value:
duration_startdate:
duration_enddate:
identifier_value:
input_value:
attribute_type:
output_type:
output_id:
cause_id:
Genetic
This data element can be queried (in an aggregated and anonymized manner) through the Beacon API developed for CARE-SM. For more information, click here
model: Genetic
pid: Patient Unique Identifier.
value:
value_datatype:
activity: Full concept IRI for the specific method.
unit:
input: Full concept IRI for the type of substance sample analysed.
target:
frequency_type:
frequency_value:
startdate: ISO 8601-formatted start date of the data registration.
enddate: ISO 8601-formatted end date of the data registration in case it is different from startdate.
age: The patient’s age at the time the observation was taken.
comments: Additional human-readable comments.
event_id: Visit occurrence identifier.
organisation:
protocol_id: IRI reference to any associated protocol.
duration_value:
duration_startdate:
duration_enddate:
identifier_value: Lexical notation for this specific variant (e.g. HGVS), e.g. NC_000023.9:g.32317682G>A. One row per variant: rows sharing the samepid+event_idattach multiple variants to the same report – seedocs/migration.md.
input_value:
attribute_type: Full concept IRI for the zygosity of this specific variant, e.g. heterozygosity or homozygosity.
output_type:
output_id:
cause_id:
Medication
model: Medication
pid: Patient Unique Identifier.
value: Prescribed or Administrated dose value.
value_datatype:
activity: Full concept IRI for the route of administration.
unit: Full concept IRI for the unit of measurement.
input: Full concept IRI identifying the specific drug administered or prescribed. Input_’s type is always the fixed “Drug Product Component” constant; this is the drug’s own identity.
target:
frequency_type: Full concept IRI for the administered/prescribed frequency annotation.
frequency_value: frequency value prescribe to the patient
startdate: ISO 8601-formatted start date of the data registration.
enddate: ISO 8601-formatted end date of the data registration in case it is different from startdate.
age: The patient’s age at the time the observation was taken.
comments: Additional human-readable comments.
event_id: Visit occurrence identifier.
organisation:
protocol_id: URL reference to a protocol.
duration_value:
duration_startdate:
duration_enddate:
identifier_value:
input_value:
attribute_type:
output_type: Full concept IRI for the type of medication record: Dose Administered or Prescribed Dose.
output_id:
cause_id:
** If you are representing CARE-SM with the OBO Foundry, use the one of the following NCIT terms:
http://purl.obolibrary.org/obo/NCIT_C167190 (Dose Administered)
http://purl.obolibrary.org/obo/NCIT_C198143 (Prescribed Dose)
Hospitalization
model: Hospitalization
pid: Patient Unique Identifier.
value: Generic optional output value, for future use – no fixed meaning defined yet for hospitalization outcomes.
value_datatype:
activity: Full concept IRI for the specific activity performed during the hospitalization.
input:
target:
frequency_type:
frequency_value:
startdate: ISO 8601-formatted start date of the data registration.
enddate: ISO 8601-formatted end date of the data registration in case it is different from startdate.
age: The patient’s age at the time the observation was taken.
comments: Additional human-readable comments.
event_id: Visit occurrence identifier.
organisation:
protocol_id: URL reference to a protocol.
unit:
duration_value: ISO 8601 duration value of the hospitalization duration interval, for instance, P10Y.
duration_startdate: ISO 8601 start date of the hospitalization duration interval.
duration_enddate: ISO 8601 start date of the hospitalization duration interval.
identifier_value:
input_value:
attribute_type:
output_type:
output_id:
cause_id:
Surgery
model: Surgery
pid: Patient Unique Identifier.
value: Generic optional output value, for future use – no fixed meaning defined yet for surgical outcomes.
value_datatype:
activity: Full concept IRI for the specific activity performed during the surgery.
unit:
input:
target: Full concept IRI for the anatomic structure that participates in the surgical intervention.
frequency_type:
frequency_value:
startdate: ISO 8601-formatted start date of the data registration.
enddate: ISO 8601-formatted end date of the data registration in case it is different from startdate.
age: The patient’s age at the time the observation was taken.
comments: Additional human-readable comments.
event_id: Visit occurrence identifier.
organisation:
protocol_id: URL reference to a protocol.
duration_value: ISO 8601 duration value of the surgery duration interval, for instance, P10Y.
duration_startdate: ISO 8601 start date of the surgery duration interval.
duration_enddate: ISO 8601 start date of the surgery duration interval.
identifier_value:
input_value:
attribute_type:
output_type:
output_id:
cause_id:
Questionnaire
model: Questionnaire
pid: Patient Unique Identifier.
value: Score/value of the patient reported response.
value_datatype:
activity:
unit:
input: Full concept IRI for the clinical question or statement to report.
target:
frequency_type:
frequency_value:
startdate: ISO 8601-formatted start date of the data registration.
enddate: ISO 8601-formatted end date of the data registration in case it is different from startdate.
age: The patient’s age at the time the observation was taken.
comments: Additional human-readable comments.
event_id: Visit occurrence identifier.
organisation:
protocol_id: Full concept IRI for the assessment tool or Patient Reported Outcome Measures specification.
duration_value:
duration_startdate:
duration_enddate:
identifier_value:
input_value:
attribute_type:
output_type:
output_id:
cause_id:
Functional Assessment
model: Functional_Assessment
pid: Patient Unique Identifier.
value: Score/value of the patient reported response.
value_datatype:
activity:
unit: Full concept IRI for the unit of measurement.
input:
target: Full concept IRI for the specific functional assessment instrument/metric used, e.g. WHODAS 2.0 or the 10-Metre Walk Test.
duration_value: ISO 8601 duration value of the functional assessment duration interval, for instance, P10Y.
duration_startdate: ISO 8601 start date of the functional assessment duration interval.
duration_enddate: ISO 8601 start date of the functional assessment duration interval.
frequency_type:
frequency_value:
startdate: ISO 8601-formatted start date of the data registration.
enddate: ISO 8601-formatted end date of the data registration in case it is different from startdate.
age: The patient’s age at the time the observation was taken.
comments: Additional human-readable comments.
event_id: Visit occurrence identifier.
organisation:
protocol_id: Full concept IRI for the exact protocol or procedure used to administer the instrument (distinct from target, the instrument/metric itself) – optional but recommended.
identifier_value:
input_value:
attribute_type:
output_type:
output_id:
cause_id:
Biobank
model: Biobank
pid: Patient Unique Identifier.
value:
value_datatype:
activity:
unit:
input: Full concept IRI for the type of tissue/sample collected during the sampling process.
target:
frequency_type:
frequency_value:
startdate: ISO 8601-formatted start date of the data registration.
enddate: ISO 8601-formatted end date of the data registration in case it is different from startdate.
age: The patient’s age at the time the observation was taken.
comments: Additional human-readable comments.
event_id: Visit occurrence identifier.
organisation:
protocol_id: IRI reference to any associated protocol.
duration_value:
duration_startdate:
duration_enddate:
identifier_value:
input_value:
attribute_type:
output_type:
output_id: Full IRI identifying the biobank collection.
cause_id:
Consent
model: Consent
pid: Patient Unique Identifier.
value: some label describing consent outcome
value_datatype:
activity:
unit:
input: Structural only – Input_’s type is always the fixed “Consent Form” constant; seeinput_valuefor the actual filename.
target:
frequency_type:
frequency_value:
startdate: ISO 8601-formatted start date of the data registration.
enddate: ISO 8601-formatted end date of the data registration in case it is different from startdate.
age: The patient’s age at the time the observation was taken.
comments: Additional human-readable comments.
event_id: Visit occurrence identifier.
organisation:
protocol_id: IRI reference to any associated protocol.
duration_value:
duration_startdate:
duration_enddate:
identifier_value:
input_value: Consent form filename and version, e.g. consent_form_v2.1.pdf(not a URL).
attribute_type:
output_type: Full concept IRI describing the consent statement, e.g. Data Use Permission or willingness to be contacted.
output_id:
cause_id:
** If you are representing CARE-SM with the OBO Foundry, use the one of the following DUO and OBIB terms:
http://purl.obolibrary.org/obo/DUO_0000001 (Data Use Permission)
http://purl.obolibrary.org/obo/OBIB_0000488 (willingness to be contacted)
Clinical trial
model: Clinical_trial
pid: Patient Unique Identifier.
value_datatype:
unit:
input:
target: Full concept IRI for the genetic or disease condition.
frequency_type:
frequency_value:
startdate: ISO 8601-formatted start date of the data registration.
enddate: ISO 8601-formatted end date of the data registration in case it is different from startdate.
age: The patient’s age at the time the observation was taken.
comments: Additional human-readable comments.
event_id: Visit occurrence identifier.
organisation:
protocol_id: IRI reference to any associated protocol.
value:
activity:
duration_value:
duration_startdate:
duration_enddate:
identifier_value:
input_value:
attribute_type:
output_type:
output_id: Full IRI identifying the clinical trial.
cause_id:
value: Study report name/identifier.
Cohort
model: Cohort
pid: Patient Unique Identifier.
value_datatype:
unit:
input:
target: Full concept IRI for the genetic or disease condition.
frequency_type:
frequency_value:
startdate: ISO 8601-formatted start date of the data registration.
enddate: ISO 8601-formatted end date of the data registration in case it is different from startdate.
age: The patient’s age at the time the observation was taken.
comments: Additional human-readable comments.
event_id: Visit occurrence identifier.
organisation:
protocol_id: IRI reference to any associated protocol.
value:
activity:
duration_value:
duration_startdate:
duration_enddate:
identifier_value:
input_value:
attribute_type:
output_type:
output_id: Full IRI identifying the cohort.
cause_id:
value: Study report name/identifier.