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Innovations in Oncology Q2 2023

Rare cancer management can continue to improve with multidisciplinary research

Microbiologist Working on Computer with Display Showing Gene Editing Interface.
Microbiologist Working on Computer with Display Showing Gene Editing Interface.
iStock / Getty Images Plus / gorodenkoff

Dr Kellie Dean

Junior Council Treasurer, IACR & Lecturer and Principal Investigator, School of Biochemistry and Cell Biology, University College Cork

Dr Niamh Buckley

Grants and Awards Officer, IACR & Reader In Personalised Medicine and Pharmacogenomics, Queen’s University Belfast

Rare cancer is considered as such when the number of people diagnosed is equal to or less than six new cases per 100,000 people in a year.


The Irish Association for Cancer Research (IACR) is an All-Ireland nonprofit organisation for scientific and healthcare researchers across cancer disciplines. Our overarching aim is to improve the lives of people living with and beyond a cancer diagnosis through multidisciplinary research.

Rare cancer research and rare subtypes of common cancers

One area of focus is rare cancers, such as ovarian cancer, with approximately 600 cases per year on the island of Ireland and ranked fourth among cancer deaths. IACR researchers also focus on rare subtypes of common cancers.

One example is a subtype of breast cancer, called triple-negative, due to its molecular features. While this breast cancer accounts for 15–20% of all breast cancer cases, it accounts for almost half of all breast cancer deaths. Another example is neuroendocrine lung cancer which accounts for 1–2% of lung cancer cases.

These rare subtypes may need to be managed differently from other subtypes of the same cancer to maximise patient outcomes. Furthermore, diagnosis of these cancers can be challenging given low public awareness of the disease and/or the associated symptoms. Importantly, doctors, especially outside larger/regional centres, may not frequently or ever manage a patient with these rarer cancers.

One potential way to help overcome these challenges is through collaboration and consolidated approaches such as national genomics studies.

Challenges of managing rare types of cancer

Research — to enable better diagnosis, management and outcomes — for rare cancer can be challenging given the differences between each patient and the low number of cases. This affects the success of clinical trials designed to help patients because the trial may be required to run over longer periods or include more centres to recruit the number of patients required for meaningful interpretation of any findings.

One potential way to help overcome these challenges is through collaboration and consolidated approaches such as national genomics studies. For example, initial findings from analysis of genomes from >2,000 families of newborns with rare diseases — including cancer — have helped determine the underlying genetic variation. This information can impact diagnoses and have immediate benefits for the clinical decisions made during treatment.

Through the Higher Education Authority initiative, many All-Ireland research programmes are currently underway, bringing together researchers to tackle these rare cancers. This collaborative approach is embraced and encouraged by the IACR through our annual conference as well as funding calls to continue to bring together the best researchers on the island to conquer cancer.

Learn more at iacr.ie

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