Around 18% of all cancers develop in the female reproductive organs which are considered very rare, accounting for 5-500 cases per rare cancer a year in the UK.
“This means that we cannot be certain that we manage patients quite as well as more common cancers because we only have anecdotal experiences to refer to, rather than large scale trials which are more accurate.” – Professor Marcia Hall
Entirely supported by CTRT, RaNGO is run from Mount Vernon Cancer Centre and has an anonymised national registry of patients with these very specific rare cancers, including how patients are currently treated and the outcomes.
“This registry will enable us to pool our experiences for treating patients with the same diagnosis, improving our knowledge base. This should help us develop better treatment options for these patients as well as help us to develop more accurate information sheets for patients affected by this condition and their families in the future.” – Professor Marcia Hall
RaNGO also facilitates the donation of tissue, obtained from any operations or biopsies, from these patients, for future scientific research. The UK gynaecological cancer community is very supportive of this initiative and already more than half of the cancer centres which treat these cancers have opened the RaNGO study to add their cases.
Many other countries have similar initiatives underway and ultimately we will use the RaNGO results to collaborate with international colleagues.
The next step for this project is to explore the easiest way to be able to open clinical trials of novel treatments, in a timely manner for these small groups of patients.