by Lauren Ataman-Millhouse, Administrative Director, Oncofertility Consortium; Research Project Manager; OB/GYN, Feinberg School of Medicine, Northwestern University
Fertility preservation in the cancer setting, known as oncofertility, is a field that requires cross-disciplinary interaction between physicians, basic scientists, clinical researchers, ethicists, lawyers, educators, and religious leaders. Funded by the National Institutes of Health, the Oncofertility Consortium (OC) was formed to be a scientifically grounded, transparent, and altruistic resource, both intellectual and monetary, for building this new field of practice capable of addressing the unique needs of young patients with cancer. The OC has expanded its attention to include other nonmalignant conditions that can threaten fertility, and the work of the OC now extends around the globe, involving partners who together have created a community of shared effort, resources, and practices. The OC creates materials that are translated, disseminated, and amended by all participants in the field, and local programs of excellence have developed worldwide to accelerate the pace and improve the quality of oncofertility research and practice. This paper reviews the oncofertility global partner programs and the capacity building activities that strengthen these research and clinical programs, ultimately improving patient care.
Established in 2007 at Northwestern University, the OC is an inter-institutional, interdisciplinary consortium to expand research in fertility loss in patients with cancer, accelerate clinical translation of fertility preservation techniques, and address the complex health care and quality-of-life issues that concern young patients with cancer whose fertility may be threatened by their disease or its treatment. To facilitate sharing knowledge and resources among domestic partners, the OC established the National Physicians Cooperative (NPC), which represents over 60 centers across the United States that provide oncofertility services. As the NPC grew, it became clear that there was a global need for a similar program. Therefore, the OC expanded its membership to include international partner sites that were either already providing oncofertility services or sites who wished to expand their offerings to include them. The OC now works with reproductive specialists from all over the world in an effort to better serve children, adolescents and young adults with cancer and other fertility-threatening diseases. Global collaborations not only shed new light on fertility threatening conditions in other countries, but also give our network insight in dealing with broad cultural issues. It is this interdisciplinary, multicultural and multi-lingual dialogue that the Consortium thrives on in order to continue to produce cutting-edge scientific research, which eventually translates to outstanding clinical care across the globe.
Global partners of the OC receive tools and guidance to set up their own consortium. Lauren Ataman-Millhouse and the team at Northwestern University serve global partners in an effort to build and expand their existing services and outreach. Available to global partners are all of the materials on our websites. This includes:
- The iSaveFertility mobile app that can be used by physicians when meeting with their patients. (The app includes information for males, females and children and is currently provided in English and Spanish)
- The myoncofertility website for patients, parents and partners.
- Any of the materials on the main website.
- Branding materials are also available to all global partners.
We encourage global partners to translate these materials and disseminate them to international audiences. Global partners are also encouraged to provide our team with content and links to include on our website. Making these materials visible to other OC members fosters interaction among groups who are now able to share resources, methodologies, and other experiences in the field. The ultimate goal of the OC Global Partners Network is to catalyze the field by bringing together groups to create the momentum for clinical activities (shared IRBs, shared patient case studies, inclusion of allied health professions), research (sharing results – failures and successes – in ways that hastened work) and patient needs (websites, patient decision tools, patient navigator). By facilitating these interactions, we ensure that the global oncofertility community is up-to-date on research that can continue to be rapidly translated to the clinic. Establishing a strong global network not only drives the collaborative nature of the OC, but also helps global partners build their own consortiums and fertility preservation networks. CKN is proud to represent Canada in the Global Partners Network.