The power of patient experience in rare ovarian cancer

Sometimes help for scientific discoveries comes from the most unassuming places. Especially for rare diseases, the power of community can be the key to making a difference.

The challenge and the unexpected solution

For Associate Professor Simon Chu, the problem leading Hudson Institute’s research into rare ovarian cancers was getting access to large quantities of real-world data, and the solution came from a surprising place: social media.

GCT Survivor Sisters: a global community

While A/Prof Chu continued his search for clues to detecting and treating one of the rare ovarian cancers, Granulosa Cell Tumours (GCT), on the other side of the world a disparate group of women were dealing with the reality of being diagnosed with a disease their doctors knew little about.

Their initiative, in the face of an information vacuum, led to the formation of the Facebook group, GCT Survivor Sisters, with a global membership.

Survivor data informs research

For the Survivor Sisters, A/Prof Chu and his team represented hope and a chance to use their own experiences to increase knowledge of GCT within the patient, medical and research communities.

For the Hudson Institute team, the Survivor Sisters provided a unique information resource: a previously invisible pool of realworld data and, crucially, tumour samples on which to draw in their research.

When the Survivor Sisters went searching for information, the internet led them to Hudson Institute and a collaboration was born.

“Effectively, what this group has done is build a medical database with some amazing information. What’s even more special is that they chose to share their database, so we can understand the disease better through survivors’ experiences, learning what is important for them as well as provide precious patient tumour samples to help design better treatments,” A/Prof Chu said.

A unique collaboration

GCT Survivor Sisters has grown from a handful of women in the USA and UK to more than 1,800 members worldwide, including Australians, as part of the local organisation, ROCinc.

One unexpected result of their collective work is that they are now officially recognised in the scientific literature on this disease, with a seminal publication on the use of patient-reported outcomes appearing in Cancer, the main journal of the American Cancer Society, with an editorial written on the research.

“This unique collaboration has meant we are being contacted by women with GCT worldwide who want to donate their tumour tissue to help with our research,” A/Prof Chu said.

“They also contribute to our patient-driven research program, where the GCT Survivor Sisters identified a subject that has been of great interest to them, leading to a new study on the efficacy of radiotherapy for this disease.”

“Our direct engagement with survivors of this disease serves as a constant source of motivation, driving my ongoing commitment to understanding GCT and exploring improved treatment options. As a leading research group in this disease, the combination of new discoveries and access to state-of-the-art technologies makes this a particularly exciting and fulfilling phase in being involved in this work,” A/Prof Chu said.

Next steps in GCT research

The next major step is to conduct pre-clinical proof-of-concept work for the novel combination therapies that will hopefully lead to clinical trials for those with recurrent GCT.

This unlikely partnership provides a template for incorporating the patient experience into medical research, and a beacon of hope for women who previously felt very much alone.