Rare cancer incidence in Northern Ireland 1993-2018: Estimation of cancer burden

Sinead Hawkins, Gerard Savage, Rasha Alhazzaa, Helen Mitchell, David Donnelly, Anna Gavin

Research output: Contribution to conferencePoster

Abstract

Background:
The Northern Ireland Cancer Registry (NICR)
holds cancer incidence data since 1993. The Surveillance of Rare Cancers in Europe project
RARECARENet created a list of rare cancers using
International Classification of Diseases (ICD) for
Oncology, 3rd edition (ICD-O-3) defined as an
incidence rate of <6 per 100000 per person years
across the European Union and the United Kingdom. 22% of all cancers diagnosed are rare. Rare
cancers can require more specialised treatment
and support.
Materials and Methods:
The NICR dataset for cancer incidence 1993-2018
were converted from ICD-10 to ICD-O-3. The
RARECARENet rare cancer list December 2015 was
merged into the dataset and registrations assigned
as a rare or non-rare cancer. Registrations that were
outside of the RARECARENet list were excluded
from analysis.
Results:
2014-2018 there were an average of 1228 males and
1234 female rare cancers diagnosed in Northern
Ireland (NI) annually. Rare cancers made up 25.5% of
male cancers and 25.6% of female cancers. The risk
of developing rare cancer before the age of 75 was 1 in
11.2 for men and 1 in 12.4 for women, while before the
age of 85 the risk was 1 in 7.0 for men and 1 in 8.1 for
women. The most common rare cancer types among
men were haematological cancer (29.3%), digestive
system cancer (19.9%) and head and neck cancer
(18.9%), while the most common rare cancer types
among women were female genital cancer (26.0%),
haematological cancer (22.2%) and digestive system
cancer (13.6%). Rare cancer incidence was 6% below
n the NI average in the more affluent areas and 15%
higher in the most economically deprived areas.
25year prevalence of rare cancer in 2018 is 17 546. Age
standardised five-year net survival is 47.8%.
Conclusions:
Rare cancer accounts for approximately a quarter
of all male and female cancers in NI with highest
rates for haematological malignancies and digestive
tract malignancies. They are more common with
socio-economic deprivation.
Original languageEnglish
Pages1-101
Number of pages83
Publication statusPublished - 16 Nov 2021
EventENCR Scientific Meeting 2021 - Virtual Event
Duration: 16 Nov 202118 Nov 2021

Conference

ConferenceENCR Scientific Meeting 2021
Period16/11/202118/11/2021

Keywords

  • rare cancer
  • cancer registry
  • Northern Ireland

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