Dr. Carey’s project will survey centres throughout the country for information on treatment and patient outcomes for LGSC. It will also promote participation in clinical trials for women with LGSC.

Access to research studies or new treatment options is challenging for women with LGSC and other rare cancers, as their conditions often don’t receive equal attention or funding as more common cancers. This also means that approaches to managing LGSC vary throughout the country — Dr. Carey refers to a recent study which found that 34 different types of chemotherapy were used to manage LGSC patients.

“The thing that we hear from the patients is that they very much appreciate more attention being given to the treatment of the cancer – but they also want quality time, even if they can’t be cured. So, taking ineffectual treatments isn’t helpful. We want to try and not only address how to improve treatment, but also improve their quality of life and streamline management to obtain the best outcomes.”

Dr. Carey and his team hope that the knowledge they gain through this study can help clinicians provide more consistent treatment and in doing so enhance researchers’ ability to draw conclusions from the data they collect. They also hope that this work will help bring women’s rare cancers into the spotlight.

Learn more about the other projects funded by the 2019 Women’s Health Catalyst Grant.