MII IG Kerndatensatz-Modul Onkologie
2027.0.0-ballot.1 -
Germany
MII IG Kerndatensatz-Modul Onkologie
2027.0.0-ballot.1 -
Germany
This page is part of the MII IG Kerndatensatz-Modul Onkologie (v2027.0.0-ballot.1: Release) based on FHIR (HL7® FHIR® Standard) R4. This is the current published version in its permanent home (it will always be available at this URL). For a full list of available versions, see the Directory of published versions
The TNM classification is not applicable to most childhood tumours: cancers in childhood and adolescence are rare and heterogeneous, and they are mostly staged according to entity-specific staging systems. For the same disease, several competing systems exist whose use differs between countries and registries — international comparisons of stage distribution, survival and quality of care are therefore only possible to a limited extent.
The Toronto Paediatric Cancer Stage Guidelines (Toronto Guidelines for short) close this gap. They were developed at a consensus meeting in October 2014 in Toronto by 26 international experts from 17 countries and published in 2016 as Paediatric cancer stage in population-based cancer registries: the Toronto consensus principles and guidelines (Gupta et al., Lancet Oncol 2016;17:e163–e172). They are endorsed by the UICC and were adopted as the chapter "Paediatric Tumours" into the TNM classification, 8th edition.
The Toronto Guidelines are therefore not a separate, competing classification system, but an agreed rule for which established staging system a cancer registry should collect for each entity — and at what level of detail.
At the core of the guidelines is a tiered model that takes account of the differing resources available to cancer registries. Recommendations are given for 18 major childhood cancers:
| Tier | Addressee | Content |
|---|---|---|
| Tier 1 | registries with limited resources | coarse staging without elaborate imaging |
| Tier 2 | well-resourced registries | the established entity-specific staging system |
| Tier 3 | optional | additional prognostic factors |
The Tier 1 values are deliberately coarse, but not uniform across all entities. For hepatoblastoma and rhabdomyosarcoma, for example, a distinction is made between Localised (tumour confined to the organ or area of origin including regional lymph nodes) and Metastatic (distant metastases present); non-Hodgkin lymphoma instead uses Limited and Advanced (involvement of bone marrow and/or CNS). A common value list spanning all entities therefore does not exist.
At Tier 2 the guidelines refer to the respective established systems:
| Entity | Tier 2 system |
|---|---|
| Hepatoblastoma | PRETEXT |
| Osteosarcoma, Ewing sarcoma | as Tier 1 |
| Rhabdomyosarcoma | modified TNM plus favourable/unfavourable tumour site → stage I–IV |
| Soft tissue sarcoma (non-rhabdomyosarcoma) | TNM |
| Wilms tumour | two systems: after primary resection, or SIOP in the case of preoperative chemotherapy |
| Retinoblastoma | pathological classification after enucleation, or IRSS |
| Neuroblastoma | INRGSS (International Neuroblastoma Risk Group Staging System) |
| Medulloblastoma, ependymoma | dedicated Tier 2 system of the TNM chapter |
| Ovary | TNM/FIGO |
| Non-Hodgkin lymphoma | St. Jude/Murphy |
| Hodgkin lymphoma | Ann Arbor or Lugano (as in adults) |
Germany is to be classified as a well-resourced registry; Tier 2 is therefore the relevant level.
The oBDS is tailored to adult oncology and provides for the TNM classification as the primary staging attribute. Paediatric staging systems are represented there via the field "Weitere Klassifikationen" (other classifications, oBDS chapter 09), which records the classification name and the stage as free text.
The population-based recording of cancers in children and adolescents in Germany is additionally carried out by the German Childhood Cancer Registry (DKKR) at the IMBEI of the University Medical Center Mainz, which has been operating since 1980 and to which around 2,200 new cases from the institutions of the GPOH are reported each year. For analyses intended to connect to this environment, the Toronto system is the authoritative international frame of reference.
For version 2027, the module contains only this explanatory page. A dedicated profile representation — for instance a generic staging profile with entity-dependent value lists and invariants — has been deliberately deferred (v2028 at the earliest). A prerequisite for this is an agreement with the childhood cancer registry on which staging systems are actually maintained there and whether a FHIR representation beyond the oBDS is needed.
Until then, paediatric stages are to be represented via the existing generic
profile
MII_PR_Onko_Weitere_Klassifikationen
(mii-pr-onko-weitere-klassifikationen):
| Element | Content |
|---|---|
code.text |
name of the classification system as free text (mandatory), e.g. "INRGSS" |
code.coding.code / method |
coded indication of the system, where available (binding preferred) |
valueCodeableConcept.text |
stage as text, e.g. "L2" |
effectiveDateTime |
date of the classification |
focus |
reference to the primary tumour diagnosis |
Some of the Tier 2 systems named above can already be addressed in coded form
via the ValueSet
mii-vs-onko-weitere-klassifikationen,
among them INRGSS (SNOMED CT 1287643004), the Stannard system for
retinoblastoma (SNOMED CT 254366002), Modified Chang Staging System for
Medulloblastoma (NCIt C198826) and the Lugano Classification Childhood
Hodgkin Lymphoma (NCIt C141178).
code.coding.code/method and
valueCodeableConcept.coding bind as preferred.mii-vs-onko-weitere-klassifikationen-auspraegungen
is fed from the oBDS CodeSystem and contains no paediatric stages (no PRETEXT,
St. Jude/Murphy, IRSS, COG/SIOP). These are to be transmitted as text.The implementation guide of the §65c platform lists the Toronto stages as a
transmittable "additional classification" — as the TNM alternative for most
diagnoses in children and adolescents (valid for C00.0–D48.9). The tier is
carried directly in the classification name
(tblMeldungDiagnoseWeitereKlass.strKlassifikation):
| Classification name (reporting portal) | Corresponds to | Permitted stage codes |
|---|---|---|
| Toronto Stufe 2 | Tier 2 (established entity-specific system) | 0, 1, 1A, 1B, 2, 2A, 2B, 3, 3A, 3B, 4, 4A, 4B, A, CNS1, CNS2, CNS3, CNS-, CNS+, L, L1, L2, M, M0, M1, M2, M3, M4, MS, y1, y2, y3, X, ND |
| Toronto Stufe 1 | Tier 1 (coarse staging) | 1A, 1B, 2A, 2B, 3A, 3B, 4A, 4B, A, CNS-, CNS+, L (limited/localized), LR (locoregional), M, MS, R (regional), X, ND |
Rules from the implementation guide:
MII_PR_Onko_Weitere_Klassifikationen this
means: code.text = "Toronto Stufe 1" or "Toronto Stufe 2",
valueCodeableConcept.text = stage code from the respective list.Source: §65c implementation guide — Weitere Klassifikationen (the CSV minimum list maintained there, as of 2025-05-19, carries Toronto in the page text, not in the CSV).
The 2014 guidelines were revised by an international expert panel at the IARC; in parallel, the Paediatric Non-Stage Prognosticator (NSP) Guidelines were created for 18 cancers in children under 15 years of age (Lancet Oncol, 2020). The SEER programme bases its paediatric staging elements on the Toronto Guidelines version 2 and provides them for diagnoses from 1 January 2025. A later profile representation in the module should build on version 2.