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"Families" and List of Rare Cancers

A list of rare cancers has been provided by the RARECARE project, based on the International Classification of Diseases for Oncology (ICD-O 3rd edition). The list of rare cancers can be downloaded from the  RARECARE Website.

Following their work, the 198 currently identified rare cancers can be grouped into the following 12 "families":

  1. CENTRAL NERVOUS SYSTEM rare cancers (CNS)
  2. DIGESTIVE rare cancers
  3. ENDOCRINE ORGAN rare cancers
  4. FEMALE GENITAL rare cancers
  5. HAEMATOLOGICAL rare cancers
  6. HEAD & NECK rare cancers
  7. MALE GENITAL & UROGENITAL rare cancers
  8. NEUROENDOCRINE TUMOURS (NET) rare cancers
  9. PAEDIATRIC cancers*
  10. SARCOMAS
  11. SKIN rare cancers
  12. THORACIC rare cancers

* Paediatric tumor include mainly embryonal tumors, other neoplasms which mainly, or also, occur in childhood are included under other labels (e.g. Ewing’s sarcoma and osteosarcoma under bone sarcomas; rhabdomyosarcoma under soft tissue sarcoma; medulloblastoma under embryonal tumour of CNS)

Distribution of Families of Rare Cancers

Source: Adapted from rarecarenet.istitutotumori.mi.it

A presentation on the development of the list of rare cancers can be downloaded here.

The RARECARE project has also developed a list of 198 tumour entities on the basis of the current agreed-upon definition of rare cancers. The list presents the number of cases reported by European cancer registries during the period 2000-2007 and the corresponding incidence rates. The list is derived from the data of 94 population-based cancer registries from 24 European countries adhering to the RARECAREnet project.

The RARECAREnet list can be downloaded here.

Further reading:

  • RARE CANCERS in Europe: Rare cancers are not so rare: The rare cancer burden in Europe (November 2011, European Journal of Cancer Vol. 47, Issue 17, Pages 2493-2511); free download
  • SKIN / MELANOMA: Descriptive epidemiology of malignant mucosal and uveal melanomas and adnexal skin carcinomas in Europe (May 2012, European Journal of Cancer Vol. 48, Issue 8, Pages 1167-1175); abstract
  • THORACIC: Rare thoracic cancers, including peritoneum mesothelioma (May 2012, European Journal of Cancer Vol. 48, Issue 7, Pages 949-960); free download
  • UROGENITAL: Incidence and survival of rare urogenital cancers in Europe (March 2012, European Journal of Cancer Vol. 48, Issue 4, Pages 456-464); abstract
  • MALE GENITAL: Burden of testicular, paratesticular and extragonadal germ cell tumours in Europe (January 2012, European Journal of Cancer Vol. 48, Issue 2, Pages 159-169); abstract
  • ENDOCRINE: Carcinoma of endocrine organs: Results of the RARECARE project (September 2012, European Journal of Cancer, Volume 48, Issue 13 , Pages 1923-1931); free download
  • CNS: Epidemiology of glial and non-glial brain tumours in Europe (July 2012, European Journal of Cancer Vol. 48, Issue 10, Pages 1532-1542); abstract
  • SARCOMAS: Descriptive epidemiology of sarcomas in Europe: Report from the RARECARE project (18 October 2012, European Journal of Cancer, In Press Corrected Proof); abstract
  • DIGESTIVE: Incidence, prevalence and survival of patients with rare epithelial digestive cancers diagnosed in Europe in 1995–2002 (July 2012, European Journal of Cancer Vol. 48, Issue 10, Pages 1417-1424); abstract
  • HEAD & NECK: Rare cancers of the head and neck area in Europe (April 2012, European Journal of Cancer Vol. 48, Issue 6, Pages 783-796); free download
  • HAEMATOLOGIC: Incidence, survival and prevalence of myeloid malignancies in Europe (November 2012, European Journal of Cancer Vol. 48, Issue 17, Pages 3257-3266); abstract
  • EMBRYONAL: Embryonal cancers in Europe (July 2012, European Journal of Cancer Vol. 48, Issue 10, Pages 1425-1433); abstract

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