What is the objective and rationale of our project? We wish to build a Network for Rare Tumors of the Ovary (NRTO). This network will be formed of an international group of researchers, clinicians, patient advocates, charities, and dissemination specialists who all share the goal of advancing our understanding of rare, understudied non-epithelial ovarian tumors. The project leaders all have prior experience treating or researching these rare tumors and interacting with affected women, which is how they are keenly aware of all the tools and resources that are currently missing but that they would need to make real advances. Because these cancers are so rare and the number of individuals touched are so few, we believe the only way to make strides in understanding and treating these rare cancers is to pool all available knowledge and existing resources together for easier access and for the benefit of all who would use them. For practical reasons, the network will initially focus on two specific rare ovarian tumor subtypes, “small cell cancer of the ovary, hypercalcemic type” and “sex cord-stromal tumors”, for which the investigators leading the network already have some established relationships and resources to build upon. Once the structure for sharing knowledge and resources has been built, we plan to extend the network to integrate other rare ovarian tumor subtypes.

Who will benefit from our proposed network? And how? Our network will serve all the community groups participating in its creation. A central webportal will offer up-to-date information on disease biology, clinical features, and treatment options to help orient newly diagnosed patients and their families. It will host a section to assist clinicians confronted with this disease for the first time. It will include databases containing reagents and protocols that researchers can refer to that will ensure their research work uses validated methods that will yield reliable answers. This will be supported by scientific forums to enable questions and answers. The webportal will be curated not only by scientists, but also by patient advocates. It will therefore also include a forum where patients, families, and caregivers can reach out to others with similar experiences or converse with scientists. Links to established charities and community organizations will be assembled in one place to facilitate access.

What unmet need is being addressed? It can be readily seen from our patient advocate letters that all of them felt there was a crucial lack of available information about their disease, along with an evident lack of research into treatment options. All of them went into advocacy for exactly these reasons, and there have been improvements because of their efforts. With their help, we intend to take things several steps further. In addition to providing a webportal with information, we will promote awareness of these diseases and of the NRTO to the public at large using classical and social media and through regular events and updates on advancements facilitated by the network. On the research front, we will invest heavily into developing animal models derived directly from patient tumors. These are sorely lacking, for these rare ovarian tumors are crucial to enable researchers to test potential therapies and study issues like onset of drug resistance that leads to relapses after treatment. We will also create a bridge between patients and on-going clinical trials they might be eligible to participate in, no matter which part of the world they live in.

What is the advantage of the proposed resource over existing ones? There are several individual scientists with focused projects studying these tumors, including some projects by the investigators leading this proposal. There are now some charities and advocacy groups that raise funding and offer a place for affected women to come together and share their experiences. What is currently lacking are connections between these isolated efforts. Much of the fundraising is not directly connected to research support or is directed at supporting local efforts only. Patients do not speak to scientists, or vice versa. Even communication between researchers is limited, and the exchange of precious research resources such as patient data, patient samples, cellular, and animal models is difficult because of financial and legal barriers that make the process laborious. The purpose of the NRTO will be to create tools and an infrastructure that will leverage public repositories to facilitate these exchanges so that all these isolated efforts can now synergize to generate concrete advances in improving outcomes for affected women.

What role will the rare cancer stakeholder community play in this project? All levels of stakeholders will play an active role in the NRTO, from individual patients advocating to inspire others to contribute their stories, medical data, and samples to the NRTO biobanks, to scientists and clinicians collaborating to develop crucial research tools, to foundations committing to providing long-term financial support for the activities of the NRTO once the current project is complete. The NRTO will be a group effort, and this is how we will succeed.