Introduction/Background According to RARECARE, in Europe rare cancers account for 18% of all female genital tract cancers (figure 1).1 Although the quality of UK cancer registry collection has improved significantly recently, national registries do not record treatments or outcomes nor do they obtain patient consent allowing subsequent access for research use of tissue samples. Yet the amalgamation of such clinical information and permissions is essential to facilitate evaluation of existing strategies and improve options/outcomes for patients. RaNGO, a study developed by Gynaecological Clinical Studies Group, demonstrates the feasibility of collecting accessible information about such cancers in the UK. It includes the development of a tissue bank with appropriate patient consents, for suitable ethically approved translational research projects.
Methodology Patients with a specified rare gynaecological cancer (see table 1) are offered participation in RaNGO a multicentre, non-randomised study to create an information repository to audit treatments/outcomes and a virtual tissue bank for future translational research. Consent is obtained for collection/retention of anonymised data and the provision of appropriate bloods, bodily fluids and tissue samples. Specific informed consent is sought for the exchange/release of data from the relevant National Cancer Registries (UK) for local audit purposes and for sharing hemi-aggregated RaNGO data internationally in the future.
Results Of the 44 UK gynaecological cancer centres - 5 are currently fully open to recruitment, 10 are in set-up and 20 patients are recruited but up to date details will be provided in November 2019.
Conclusion RaNGO demonstrates the safety/feasibility of acquiring blood, tumour samples and fluid from women with rare neoplasms of gynaecological origin from across the UK. The collection of detailed information about such patients will provide a much-needed benchmark of current management strategies. Involving all 44 gynaecological cancer centres will facilitate the development of future trials to improve outcomes for these patients
Disclosure Nothing to disclose.
Statistics from Altmetric.com
If you wish to reuse any or all of this article please use the link below which will take you to the Copyright Clearance Center’s RightsLink service. You will be able to get a quick price and instant permission to reuse the content in many different ways.