When it comes to rare forms of cancer, researchers and patients share the same problem – finding enough information from which to make informed decisions.
For Associate Professor Simon Chu and Research Assistant Maria Alexiadis, specialising in Granulosa Cell Tumours (GCT), it sometimes means searching the globe for tissue samples and case studies. For women with this rare form of ovarian cancer, information about the disease was even harder to come by.
Kaye Ackermann from Charlotte, North Carolina, USA, found that the time after her diagnosis was a struggle, as many doctors have very limited knowledge of this rare ovarian cancer.
The solution, for patients and researchers, came from an unlikely source.
A social media solution
Not far away, Kim Eroh was facing the same issues following her GCT diagnosis, so she turned to social media and created the solution with a Facebook group, GCT Survivor Sister.
“I founded GCT Survivor Sisters in 2012 with four members and a goal to connect to others who had this rare ovarian cancer,” Ms Eroh said.
They realised they had a unique opportunity to gather information about their experiences, and to find common ground in their diagnoses, treatments and outcomes.
What they didn’t realise was that they were also creating a unique and valuable resource for GCT researchers.
That is where Hudson Institute came in.
GCT Survivor Sisters-Hudson collaboration
The GCT Survivor Sisters group made contact with A/Prof Chu, and a patient-researcher partnered collaboration was formed to study what could be the world’s largest untapped resource of firsthand data on this rare disease.
A/Prof Chu’s Hormone Cancer Therapeutics research group is striving to bring hope to GCT patients – through better diagnosis, early detection and more targeted treatment.
“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 that database with us, so that we can understand the unmet needs that are most important to these special women, for example, helping us to develop better treatments,” A/Prof Chu said.
Expert GCT Survivor Sisters knowledge captured
Meanwhile, the GCT Survivor Sisters group has grown to over 1,800 members worldwide and their members have become ‘experts’ through their own experiences, supporting each other through a cancer that very few understand.
As Kim Eroh said: “We are thrilled that Hudson Institute has seen value in GCT Survivor Sisters data and has provided the opportunity to present it to the cancer research community.
“We are making a difference in the lives of women with GCT, and this research is the pinnacle of our efforts to date.”
Read more about rare ovarian cancer
Journal information | Simon Chu, Maria Alexiadis et al, (2023) How social media can help to understand treatment experiences of survivors of rare cancers: Findings from the Granulosa Cell Tumor Survivor Sisters Facebook group member survey, Cancer. DOI 10.1002/cncr.34767
In this issue of Hudson News Summer 2023
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