Demographics

Birthdate

This data element is meant to define patient date of birth. The module describes the one of the common data elements group. These elements, defined by the JRC, can be found on the EU RD Platform at this link.

Data visualization

The full date on which the patient was born, recorded in ISO 8601 formatted date.

RDF-Quad Examples: Sample RDF-Quad representations of this data element are available, generated by our implementation workflows. CARE-SM Implementation Github repository

How to populate this data using CARE-SM: A CSV glossary for this data element is described in our Implementation Guide. Check our CSV Glossary.

Birthyear

Data visualization

The four-digit year representing the patient’s year of birth. Used when full birthdate is unavailable due to privacy concerns or data minimization policies.

RDF-Quad Examples: Sample RDF-Quad representations of this data element are available, generated by our implementation workflows. CARE-SM Implementation Github repository

How to populate this data using CARE-SM: A CSV glossary for this data element is described in our Implementation Guide. Check our CSV Glossary.

Birthplace

The country in which the patient was born.

Data visualization

RDF-Quad Examples: Sample RDF-Quad representations of this data element are available, generated by our implementation workflows. CARE-SM Implementation Github repository

How to populate this data using CARE-SM: A CSV glossary for this data element is described in our Implementation Guide. Check our CSV Glossary.

Deathdate

This module describes the data element in the Common Data Elemments group. These elements, defined by the JRC, can be found on the EU RD Platform at this link.

Data visualization

The full date on which the patient’s death, recorded in ISO 8601 formatted date. Also the underlying medical condition that directly led to the patient’s death.

RDF-Quad Examples: Sample RDF-Quad representations of this data element are available, generated by our implementation workflows. CARE-SM Implementation Github repository

How to populate this data using CARE-SM: A CSV glossary for this data element is described in our Implementation Guide. Check our CSV Glossary.

Sex

This module describes the data element in the Common Data Elemments group. These elements, defined by the JRC, can be found on the EU RD Platform at this link.

Data visualization

The biological sex of the patient.

RDF-Quad Examples: Sample RDF-Quad representations of this data element are available, generated by our implementation workflows. CARE-SM Implementation Github repository

How to populate this data using CARE-SM: A CSV glossary for this data element is described in our Implementation Guide. Check our CSV Glossary.

Participation and timeline

First confirmed visit

This module describes the data element in the Common Data Elemments group. These elements, defined by the JRC, can be found on the EU RD Platform at this link.

Data visualization

The date of the patient’s first verified interaction with the healthcare system or enrollment in a study.

RDF-Quad Examples: Sample RDF-Quad representations of this data element are available, generated by our implementation workflows. CARE-SM Implementation Github repository

How to populate this data using CARE-SM: A CSV glossary for this data element is described in our Implementation Guide. Check our CSV Glossary.

Participation status

This module describes the data element in the Common Data Elemments group. These elements, defined by the JRC, can be found on the EU RD Platform at this link.

Data visualization

Indicates the current engagement of the patient in a healthcare program, study, or registry.

RDF-Quad Examples: Sample RDF-Quad representations of this data element are available, generated by our implementation workflows. CARE-SM Implementation Github repository

How to populate this data using CARE-SM: A CSV glossary for this data element is described in our Implementation Guide. Check our CSV Glossary.

Symptoms onset

This module describes the data element in the Common Data Elemments group. These elements, defined by the JRC, can be found on the EU RD Platform at this link.

Data visualization

The date (recorded in ISO 8601 formatted date) when the patient first noticed or reported symptoms related to the condition of interest, also described.

RDF-Quad Examples: Sample RDF-Quad representations of this data element are available, generated by our implementation workflows. CARE-SM Implementation Github repository

How to populate this data using CARE-SM: A CSV glossary for this data element is described in our Implementation Guide. Check our CSV Glossary.

Conditions and findings

Phenotype

This module describes the data element in the Common Data Elemments group. These elements, defined by the JRC, can be found on the EU RD Platform at this link.

Data visualization

Describes qualitative observable characteristics, signs, or traits expressed by the patient.

RDF-Quad Examples: Sample RDF-Quad representations of this data element are available, generated by our implementation workflows. CARE-SM Implementation Github repository

How to populate this data using CARE-SM: A CSV glossary for this data element is described in our Implementation Guide. Check our CSV Glossary.

Diagnosis

This module describes the data element in the Common Data Elemments group. These elements, defined by the JRC, can be found on the EU RD Platform at this link.

Data visualization

A clinically established identification of a disease or condition affecting the patient.

RDF-Quad Examples: Sample RDF-Quad representations of this data element are available, generated by our implementation workflows. CARE-SM Implementation Github repository

How to populate this data using CARE-SM: A CSV glossary for this data element is described in our Implementation Guide. Check our CSV Glossary.

Clinical and molecular measurements

Examination

Data visualization

Clinical findings obtained from structured evaluations such as quantitative physical exams, body measurements or medical imaging.

RDF-Quad Examples: Sample RDF-Quad representations of this data element are available, generated by our implementation workflows. CARE-SM Implementation Github repository

How to populate this data using CARE-SM: A CSV glossary for this data element is described in our Implementation Guide. Check our CSV Glossary.

Laboratory

Data visualization

Quantitative or qualitative results from laboratory tests. Results can be represented including the measured value, units, anatomic structure and sample.

RDF-Quad Examples: Sample RDF-Quad representations of this data element are available, generated by our implementation workflows. CARE-SM Implementation Github repository

How to populate this data using CARE-SM: A CSV glossary for this data element is described in our Implementation Guide. Check our CSV Glossary.

Genetic

This module describes the data element in the Common Data Elemments group. These elements, defined by the JRC, can be found on the EU RD Platform at this link.

Data visualization

Results from genomic analyses performed on the patient’s DNA or RNA. Findings may include details such as the specific genetic method, as well as the identified variants, the source of the biological sample, and zygosity information.

RDF-Quad Examples: Sample RDF-Quad representations of this data element are available, generated by our implementation workflows. CARE-SM Implementation Github repository

How to populate this data using CARE-SM: A CSV glossary for this data element is described in our Implementation Guide. Check our CSV Glossary.

Patient-reported outcomes

Questionnaire

Data visualization

Structured responses provided by the patient through standardized forms or surveys and standarized by Patient Reported Outcomes (PRO) or similar assessment questions.

RDF-Quad Examples: Sample RDF-Quad representations of this data element are available, generated by our implementation workflows. CARE-SM Implementation Github repository

How to populate this data using CARE-SM: A CSV glossary for this data element is described in our Implementation Guide. Check our CSV Glossary.

Disability

This module describes the data element in the Common Data Elemments group. These elements, defined by the JRC, can be found on the EU RD Platform at this link.

Data visualization

Measures the extent of impairment in the patient’s physical, mental, or social functioning due to their health condition, captured using standardized scales or scores (e.g. WHODAS for general functioning).

RDF-Quad Examples: Sample RDF-Quad representations of this data element are available, generated by our implementation workflows. CARE-SM Implementation Github repository

How to populate this data using CARE-SM: A CSV glossary for this data element is described in our Implementation Guide. Check our CSV Glossary.

Treatments and interventions

Medication

Records of medications that have been prescribed or administered to the patient by a healthcare professional. Includes details such as drug name, dosage, frequency, route of administration, and medication duration.

Data visualization

The module shows how the individual, defined as a patient, participates in a drug administration procedure. At this process, the agent of this medication is defined, being the drug prescribed and its route of administration. Also this procedure has as output the medication as a prescription and its value, measured among its unit of measurement and frequency.

RDF-Quad Examples: Sample RDF-Quad representations of this data element are available, generated by our implementation workflows. CARE-SM Implementation Github repository

How to populate this data using CARE-SM: A CSV glossary for this data element is described in our Implementation Guide. Check our CSV Glossary.

Hospitalization

Data visualization

Records of inpatient stays, including dates of admission and discharge and the reason for hospitalization.

RDF-Quad Examples: Sample RDF-Quad representations of this data element are available, generated by our implementation workflows. CARE-SM Implementation Github repository

How to populate this data using CARE-SM: A CSV glossary for this data element is described in our Implementation Guide. Check our CSV Glossary.

Surgical intervention

Data visualization

Documentation of surgical procedures performed on the patient. Includes the type of surgery, date and description of the anatomical site.

RDF-Quad Examples: Sample RDF-Quad representations of this data element are available, generated by our implementation workflows. CARE-SM Implementation Github repository

How to populate this data using CARE-SM: A CSV glossary for this data element is described in our Implementation Guide. Check our CSV Glossary.

Research

Biobank

This module describes the data element in the Common Data Elemments group. These elements, defined by the JRC, can be found on the EU RD Platform at this link.

Data visualization

A record indicating whether the patient has donated biological samples for long-term storage in a biobank. This entry includes information on the type of samples collected, the date of collection, the sample accession number, and details about the biobank.

RDF-Quad Examples: Sample RDF-Quad representations of this data element are available, generated by our implementation workflows. CARE-SM Implementation Github repository

How to populate this data using CARE-SM: A CSV glossary for this data element is described in our Implementation Guide. Check our CSV Glossary.

Clinical trial

Data visualization

Information about the patient’s enrollment in a clinical trials, including the associated diasease and condition and participant healthcare institute.

RDF-Quad Examples: Sample RDF-Quad representations of this data element are available, generated by our implementation workflows. CARE-SM Implementation Github repository

How to populate this data using CARE-SM: A CSV glossary for this data element is described in our Implementation Guide. Check our CSV Glossary.

Cohort

Data visualization

Information about the patient’s enrollment in a cohort, including the associated diasease and condition and participant healthcare institute.

RDF-Quad Examples: Sample RDF-Quad representations of this data element are available, generated by our implementation workflows. CARE-SM Implementation Github repository

How to populate this data using CARE-SM: A CSV glossary for this data element is described in our Implementation Guide. Check our CSV Glossary.

List of ontogies used

Prefix

Ontology Name or Namespace

Prefix IRI

obi

Ontology for Biomedical Investigations

http://purl.obolibrary.org/obo/OBI_

ncit

NCI Thesaurus

http://purl.obolibrary.org/obo/NCIT_

geno

Genotype Ontology

http://purl.obolibrary.org/obo/GENO_

sio

Semanticscience Integrated Ontology

http://semanticscience.org/resource/SIO_

obib

Ontology for Biobanking

http://purl.obolibrary.org/obo/OBIB_

duo

Data Use Ontology

http://purl.obolibrary.org/obo/DUO_

uo

Units of Measurement Ontology

http://purl.obolibrary.org/obo/UO_

maxo

Medical Action Ontology

http://purl.obolibrary.org/obo/MAXO_

opmi

Ontology of Precision Medicine and Investigation

http://purl.obolibrary.org/obo/OPMI_

ogms

Ontology for General Medical Science

http://purl.obolibrary.org/obo/OGMS_

iao

Information Artifact Ontology

http://purl.obolibrary.org/obo/IAO_

omit

Ontology for MIRNA Target

http://purl.obolibrary.org/obo/OMIT_