Over 50% of gynaecological cancers can be classified as rare according to the RARECARE definition of an incidence of <6 per 100,000 per year. This presents unique challenges across the continuum of care from prevention to survivorship. Addressing these challenges requires greater collaboration across communities between healthcare professionals and patients, underpinned by increased funding for research in rare gynaecological tumours. The Way Forward is multi-faceted, incorporating improved diagnosis, harmonising clinical practice guidelines, working in networks to improve biobanking and data registries, and investing in practice-changing, transformative research, to bring about improved outcomes for those impacted by rare gynaecological cancers. Central to these practices will be patient empowerment and advocacy reflecting the voice of those ‘living with a rare gynaecological cancer diagnosis.’

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The Way Forward

  • Sharon O’Toole,
  • James Beirne,
  • John O’Leary

摘要

Over 50% of gynaecological cancers can be classified as rare according to the RARECARE definition of an incidence of <6 per 100,000 per year. This presents unique challenges across the continuum of care from prevention to survivorship. Addressing these challenges requires greater collaboration across communities between healthcare professionals and patients, underpinned by increased funding for research in rare gynaecological tumours. The Way Forward is multi-faceted, incorporating improved diagnosis, harmonising clinical practice guidelines, working in networks to improve biobanking and data registries, and investing in practice-changing, transformative research, to bring about improved outcomes for those impacted by rare gynaecological cancers. Central to these practices will be patient empowerment and advocacy reflecting the voice of those ‘living with a rare gynaecological cancer diagnosis.’