A strength of ITOG is its multidisciplinary team members’ routine care of patients with advanced and rare malignancies. Gathering information about these populations and combining it into a central resource in the form of a patient registry would allow our organization to analyze these diseases on a larger scale. The primary objective of an ITOG registry would be to characterize the natural history of and current practice patterns for the care of patients with advanced thyroid malignancies, with an emphasis on specific driver mutations, to allow for further critical analysis of this
cohort and for consideration in creating future trials. A registry taskforce was created for the purpose of determining the feasibility of developing such a registry and recently reported its findings and recommendations to the ITOG Board of Directors. Additionally, the taskforce held a plenary session at the 2019 IT
Initial taskforce investigations included working with a third-party vendor for creation and management of the registry, both with nonprofit groups such as AACR and in the private sector. These approaches proved cost prohibitive. Partnering with an ITOG member-affiliated institution to create a novel registry or join an existing registry was identified as more feasible. Participating in a current registry managed by one of its members allows ITOG to utilize preexisting platforms and avoid the costs and time burden associated with a ground up build.OG Annual Meeting in New York to further explore some of the salient issues surrounding registry development with the membership.
The BOD voted on moving forward with partnering with a current registry and has chosen, as an initial effort, to work with the Medullary Thyroid Cancer (MTC) Registry managed by two of its member institutions, The University of Texas MD Anderson Cancer Center and The University of California-San Francisco. The registry, helmed by ITOG members, Dr. Elizabeth Grubbs and Julie Ann Sosa, is in its eighth year and has yielded 22 publications and generated funding including an FDA RO1 and SPORE grant, as well as industry support. Opportunities for ITOG will include utilization of curated data from the registry to inform scholarship or clinical trial design and the ability to build out and foster collaboration among ITOG institutions and investigators. Initially, the registry will work with an ITOG Registry Oversight Committee and partner with 2-3 member institutions within the first two years with a minimum requirement of each institution providing >25 registrants per year. ITOG will support its member institutions’ registry contributions. An official call to recruit participating member institutions will be sent out shortly. In the meantime, please reach out to Libby Grubbs (firstname.lastname@example.org) with any questions.
To catalyze a cure for the most challenging thyroid cancers through the collaborative efforts of our unique multidisciplinary team of leading physicians, scientists, and advocates to design, coordinate, and prioritize state-of-the-art clinical trials
and correlative science.