Survivorship Passport V2.0

This profile represents the constraints applied to the Bundle resource by the PCSP FHIR Implementation Guide.

Care Plan

Chemotherapy

Diagnosis

Front Line Treatment. The first treatment given for a disease. It is often part of a standard set of treatments, such as surgery followed by chemotherapy and radiation. When used by itself, first-line therapy is the one accepted as the best treatment. If it does not cure the disease or it causes severe side effects, other treatment may be added or used instead. Also called induction therapy, primary therapy, and primary treatment.

Major Surgery.

Metadata FSE Italy.

Other info and relevant events

Progression-Relapse after FLT

Progression-Relapse during FLT

Radiotherapy

Stem Cell Transplantation.

Subject of care

Treatment Summary data model

Follow up form. The first Followup-Surpass form must be completed at the same time as the SurPass is delivered or in any case at the first visit after the end of the treatment (OT).

This profile defines how to represent Stem Cell in FHIR for describing a Stem Cell Transplantation data required by the PanCareSurPass algorithm to generate the care plan.

This profile defines how to represent the Care Plan proposed by the PCSP platoform in HL7 FHIR. This profile can be used for both the version generated by the platoform and that curated and validated by Clinicians.

This profile defines how to represent a PCSP Survivor Passport by using a HL7 FHIR Composition for the purpose of the PanCareSurPass project.

This profile defines how to represent Graft versus host disease (GvHD) in HL7 FHIR for the purpose of the PanCareSurPass project.

This profile defines how to represent metastatic cancer in FHIR for the purpose of the PanCareSurPass project. This profile is inspired from the mCode IG. Records the history of secondary neoplasms, including location(s) and the date of onset of metastases. A secondary cancer results from the spread (metastasization) of cancer from its original site (Definition from: NCI Dictionary of Cancer Terms).

This profile defines how to describe the presence of some other conditions (e.g. Hypogonadism, Growth hormone deficiency, Hydrocephalus in HL7 FHIR for the purpose of the PanCareSurPass project.

This profile defines how to represent Primary Cancer Condition in HL7 FHIR for the purpose of the PanCareSurPass project. This profile is inspired from the mCode IG. A primary cancer condition, the original or first tumor in the body (Definition from: NCI Dictionary of Cancer Terms). Cancers that are not clearly secondary (i.e., of uncertain origin or behavior) should be documented as primary. This profile should be also used for documenting primary cancer relapses during or after FLT.

This profile defines how to describe a Severe Toxicity event in HL7 FHIR for the purpose of the PanCareSurPass project.

This profile defines how to embed a PDF PCSP Survivor Passport in FHIR for the purpose of the PanCareSurPass project. This profile can be aslo used for send attachments (e.g Raditherapy reports or HDR) to the platform

This profile defines how to represent data of arrival to the center and Center information in FHIR for the purpose of the PanCareSurPass project.

This profile defines how to represent FHIR Location for the purpose of the PanCareSurPass project.

This profile defines how to represent MedicationAdministration in HL7 FHIR for describing Chemotherapy data for the purpose of the PanCareSurPass project.

This profile defines how to represent MedicationStatement in FHIR for describing minimal information about provided medications for the purpose of the PanCareSurPass project.

This profile defines how to represent Blood type/RH before or after the SCT in HL7 FHIR for the purpose of the PanCareSurPass project.

The extent of the cancer in the body, according to a given cancer staging classification system, based on evidence such as physical examination, imaging, and/or biopsy or based on pathologic analysis of a specimen.

This profile defines how to represent Chemotherapy Cumulative Dose in FHIR for the purpose of the PanCareSurPass project.

This profile defines how to represent diagnosis details (when the diagnosis was made; who made it;…) in FHIR for the purpose of the PanCareSurPass project.

This profile defines how to represent Hereditary Predispositions in HL7 FHIR for the purpose of the PanCareSurPass project.

This profile defines how to represent Radiotherapy Total Dose in FHIR for the purpose of the PanCareSurPass project.

This profile defines how to represent a Risk Factor in HL7 FHIR as determined by the PCSP platoform.

Category describing the extent of a tumor metastasis in remote anatomical locations, based on evidence such as physical examination, imaging, and/or biopsy.

Category of the primary tumor, based on its size and extent, based on evidence such as physical examination, imaging, and/or biopsy.

Category of the presence or absence of metastases in regional lymph nodes, based on evidence such as physical examination, imaging, and/or biopsy.

This profile defines how to represent the Primary Treatment Center or the Center of diagnosis in FHIR for the purpose of the PanCareSurPass project.

This profile defines how to represent Patient in FHIR for the purpose of the PanCareSurPass project.

This profile defines how to provide Front Line Treatment protocol infos in FHIR for the scope of the PanCareSurPass project.

This profile defines how to describe the Catheterization of vein Procedure in HL7 FHIR for the purpose of the PanCareSurPass project.

This profile defines how to describe the cryopreservation of sperms or oocyte for cancer patient in HL7 FHIR for the purpose of the PanCareSurPass project.

This profile defines how to provide Front Line Treatment data in FHIR for the scope of the PanCareSurPass project.

This profile defines how to convey textual information about other oncological treatments in HL7 FHIR for the purpose of the PanCareSurPass project.

This profile defines how to represent Procedures in FHIR for describing a set of Radiotherapy data required by the PanCareSurPass algorithm to generate the care plan.

This profile defines how to represent Procedures in FHIR for describing a set of data required by PanCareSurPass for Radiotherapy Boosts

This profile defines how to represent Shielding Procedures in FHIR for describing a set of Radiotherapy data required by the PanCareSurPass algorithm to generate the care plan.

This profile defines how to represent GVHD prophylaxis, conditioning regimen Procedures in FHIR for supporting Stem Cell Transplantation data, as required by the PanCareSurPass algorithm to generate the care plan.

This profile defines how to represent Procedures in FHIR for describing a set of Stem Cell Transplantation data required by the PanCareSurPass algorithm to generate the care plan.

This profile defines how to represent Procedures in FHIR for describing a set of Surgery data required by the PanCareSurPass algorithm to generate the care plan. It is used also to provide inforamtion about shunt, amputation, and other procedures

This profile defines how to describe the Transfusion Procedure in HL7 FHIR for the purpose of the PanCareSurPass project.

This extension provides a means to indicate where an act was, is or it is intended to take place.

This extension is used to indicate the kind of note captured

Qualifier to refine an body location. These include qualifiers for relative location, directionality, number, and plane, and exclude qualifiers for laterality.

The resource has an unspecified relationship with a Condition.

Qualifier to specify laterality.

This extension is used to explicitly indicate the Organ (body site) that has not been affected by this procedure.

This extension allows to indicate when the procedure was performed as Timing.

This extension provides a mean to indicate the previous clinicalStatus of a condition. It might be used for example to indicate if a relapse is now in remission.

Extend the usedReference element to BiologicallyDerivedProduct

The radiation energy used for radiotherapy. The energy spectrum is characterized by the maximum energy, the maximum accelaration voltage, or the used isotope. This extension is based on the CodeX™ Radiation Therapy RadiotherapyEnergyOrIsotope extension

This extension is used to provide a textual description of the randomization arm for trials (FLT).

This extension is used to indicate if a relapse/progression is local, remote or combined.

This extension provides a means to link the source resource to any target related information. This extension shall not be used when other more specific elements or standard extensions apply. E.g. Observation.hasMember.

Organs are 'sacrified' either to allow a radical excision of the tumor or on purpose (spleen) for staging procedures

Specify the type of donor for the cell used in a transplantation

Specify the type of source for the cell used in a transplantation

Active or resolved Condition

Acute Gvhd Grade

Affected Organs (surgery)

Types of amputation procedure this resource is referring to

Annotation type

List of WHO ATC codes for antineoplastic and immunostimulating agents.

SCT Timing events: Before/after procedure

Qualifiers to refine a body structure or location including qualifiers for relative location, directionality, number, and plane, and excluding qualifiers for laterality.

Types of documents exchanged with the PCSP platform

Types of Brachytherapy this procedure is referring to

System used for staging.

Chemotherapy cumulative dose units

Acute Gvhd Grade

Types of colostomy procedure this resource is referring to

Condition at risk proposed by the PCSP algorithm

Conditions: follow up

Types of documents exchanged with the PCSP platform

FLT Plan Type

Types of Gastrostomy procedure this resource is referring to

Grade: follow up

Gvhd condition

Hereditary Predispositions (ICD10)

Hereditary Predispositions (Orphacode)

Hereditary Predispositions or Disease

International Classification of Childhood Cancer, third edition + exceptional values

ICD-O-3 Morphology

ICD-O-3 Topography

Qualifiers to specify laterality.

Morphologically abnormal structure.

Not Applicable/Unknown Value Set

Not Performed/Unknown Value Set

Identifying codes based on the timing of classification for distant metastases (M) staging observations.

Identifying codes based on the timing of classification for primary tumor (T) staging observations.

Identifying codes based on the timing of classification for regional node (N) staging observations.

Identifying codes based on the timing of classification for stage group observations.

Other Infors Condition

Other/Unknown/Text Value Set

Types of Prosthesis this procedure is referring to

Types of Prosthetic procedure this resource is referring to

Radiotherapy device type this procedure is referring to

Types of radiotherapy cumulative dose this procedure is referring to

Radiotherapy Isotopes

Types of radiotherapy this procedure is referring to

Radiotherapy dose units

PancareSurPass radiotherapy sites Value Set

Recommendations proposed by the PCSP algorithm

Relapse type (Local/Distant/Combined)

Risk Factors used by the PCSP algorithm

Route of administration

SCT Prophylaxis Cathegory

SCT Prophylaxis Type

Sacrified Organs (surgery). Organs are 'sacrified' either to allow a radical excision of the tumor or on purpose (spleen) for staging procedures

Types of shunt surgical procedure this resource is referring to

This value set is intended to contain allowable values for Stage Group, according to TNM staging rules. AJCC codes (preferably, version 8 for current cancers) SHOULD be used.

Stem Cell Donor type

Stem Cell Source type

Stem Cell Transplantation type

Surgical Actions

Types of surgical procedure this resource is referring to

This value set is intended to contain allowable values for the M category, according to TNM staging rules. AJCC codes (preferably, version 8 for current cancers) SHOULD be used.

This value set is intended to contain allowable values for the T category, according to TNM staging rules. AJCC codes (preferably, version 8 for current cancers) SHOULD be used.

This value set is intended to contain allowable values for the N category, according to TNM staging rules. AJCC codes (preferably, version 8 for current cancers) SHOULD be used.

Toxicity Severity

Unknown or Other

PancareSurPass Conditions Code System

The International Classification of Childhood Cancer, Third Edition (ICCC-3) is a classification system used to categorize childhood cancers based on their histology and primary site. It is widely used in pediatric oncology for epidemiological studies and clinical research.

The International Classification of Diseases for Oncology, Third Edition (ICD-O-3) is a coding system used primarily for classifying and coding neoplasms (tumors) based on their topography (site) and morphology (histology). It is widely used in cancer registries and epidemiological research.

Orphanet selected codes

Coded concepts specified by the PancareSurPass Project

Condition at risk proposed by the PCSP algorithm

Recommendations proposed by the PCSP algorithm

PancareSurPass radiotherapy sites Code System

Risk Factors used by the PCSP algorithm

Example of a Childhood Cancer Survivor Passport Bundle for the PanCareSurPass project

Clinical protocol for the CINECA project

Sample of Patient created based on information available in the PCSP platform

Example of a Childhood Cancer Survivor Passport Bundle for the PanCareSurPass project (Hulafe)

Sample of Care Plan generated by the platform

Sample of Primary Diagnosis based on information provided by Hulafe (Condition)

Sample of DocumentReference used to refer a preliminary SurPass

Sample of Primary Diagnosis based on information provided by Hulafe (Encounter)

Sample of Chemotherapy based on information provided by Hulafe (Location)

Sample of Chemotherapy based on information provided by Hulafe (Ciclofosfamide)

Sample of Chemotherapy based on information provided by Hulafe (Citarabina)

Sample of Chemotherapy based on information provided by Hulafe (Metotrexato)

Sample of Chemotherapy based on information provided by Hulafe (Vincristina)

Sample of Chemotherapy based on information provided by Hulafe (Corticosteroids not used for at least 4 weeks continuously)

Sample of Chemotherapy based on information provided by Hulafe (Ciclofosfamide Cumulative Dose)

Sample of Chemotherapy based on information provided by Hulafe (Citarabina Cumulative Dose)

Sample of Chemotherapy based on information provided by Hulafe (Metotrexato Cumulative Dose)

Sample of Chemotherapy based on information provided by Hulafe (Vincristina Cumulative Dose)

Sample of Risk Factor: Anthracyclines >= 250 mg/m2

Sample of Risk Factor: RT >= 10 Gy to breasts

Sample of Risk Factor: RT >= 35 Gy to heart

Sample of Risk Factor: RT to thyroid gland

Sample of Primary Diagnosis based on information provided by Hulafe (Organization)

Sample of Patient created based on information provided by Hulafe

Sample of Patient demographics data based on information provided by Hulafe

Sample of stem cell transplantation biologically derived product (Zeisig)

Sample of Primary Cancer Condition based on information available by Mainz (Fischer)

Sample of Primary Cancer Condition based on information available by Mainz (Zeisig)

Sample of metastatic site Condition based on information available by Mainz (Zeisig)

Sample of Encounter associated to the Primary Cancer Condition Mainz sample (Fischer)

Sample of Encounter associated to the Primary Cancer Condition Mainz sample (Zeisig)

Sample of location for stem cell transplantation (Zeisig)

Sample of blood type/RH observation (Zeisig)

Sample of Observation associated to the Primary Cancer Condition Mainz sample to provide details about the diagnosis (Zeisig)

Sample of radiotherapy total dose observation from Mainz (Zeisig)

Sample of Patient created based on information provided by Mainz (Fischer)

Sample of Patient created based on information provided by Mainz (Zeisig)

Sample of radiotherapy procedure based on information from Mainz (Zeisig)

Sample of stem cell transplantation procedure from Mainz (Zeisig)

Sample of transfusion procedure (Zeisig)

Sample of Patient created based on information provided by Vulsk