CBTN Executive Council
Since its inception, the Children’s Brain Tumor Network (formerly Children’s Brain Tumor Tissue Consortium) has worked closely with patient and family foundations, ensuring that the patient perspective is always a driving force for collaborative efforts. In 2020 it became clear that CBTN had grown and matured to a place where it made sense to invite national leaders to have a shared voice in the Network’s strategic direction. This desire, paired with a goal of always ensuring that patients are at the center of the work, led the CBTN team to redefine the network’s partnership strategy to include an Executive Council, which replaced an informal Advisory Committee that engaged family foundations but did not have a formal charge. The Executive Council, which includes individuals and/or organizations committed to supporting CBTN’s mission, is charged with informing and partnering with CBTN leadership, acting as the community stakeholder representative, to drive global impact and ensure the sustainability of the network as we continue our effort to secure sustained NIH funding.
As dedicated stakeholders all Executive Council members participate in quarterly meetings, with additional participation on one of two subcommittees, Advocacy & Awareness and Fundraising & Finance. Moreover, to support international research, which now total over 200 projects, all Executive Council members are asked for a financial commitment in support of our Research Core at the D3b Center. The goal is to invite 20 members total, each contributing $25,000 to CBTN Operations. To date 14 organizations have signed on as members of the Executive Council, with a projected giving totaling upwards of $600,000 in FY21. Of that group, 9 were members of the Advisory Council and 5 are new stakeholders.
To ensure engagement across stakeholders, CBTN Partners and Supporter giving levels were also established, with each group also contributing to CBTN Operations budget. Ideally, any organization interested in supporting CBTN’s work can find a point of entry that matches their goals and interests.
Although pediatric brain tumors are the leading cause of death in children no single hospital or research laboratory sees enough patients to be able to conduct meaningful research on this disease. Thus, the CBTN was formed in 2011 and has grown to 25 institutions that have developed a large scale biospecimen and clinical data repository encompassing over 40,000 biospecimens. Leveraging the biospecimen resources, CBTN has also created non-consumptive resources including the largest clinically annotated molecular data set in the world and a large collection of preclinical models. The CBTN has empowered hundreds of research projects, publications, clinical trials and now therapeutic decision support.
Until now there has been little to no involvement by pharmaceutical companies for the development of pediatric and AYA brain tumor clinical trials or therapies. The RACE Act, which was passed last year, now requires pharma to investigate pediatric indications whenever seeking approval for an agent targeting a biologic feature shared with a pediatric cancer. Due to CBTN’s success in creating research resources, CBTN is positioned to partner with leading pharmaceutical companies in the research and development of improved treatments.
Since fall 2020, D3b staff and CBTN leadership have been connecting with experts in pharmaceuticals, biotech, bioethics, IP, and others in an attempt to gather background information and best practices to inform the development of a sustainable partnership model for commercial entities. The goal of this effort is to advance the development of pediatric brain tumor therapies, with a focus on piloting partnerships in FY21. There are currently 4 pharmaceutical companies eager to work with CBTN, from using existing data to develop potential synthetic arms to clinical trials to testing compounds on cell lines or tissue samples, it is clear that the resources that CBTN has worked so hard to amass will play a critical role in advancing the development of therapeutics for children with brain tumors.
To find out how you or your organization can collaborate with the CBTN to advance scientific research into childhood brain tumors, Contact our Director of Partnerships, Gerri Trooskin, at firstname.lastname@example.org.