Successful implementation of an international desmoid tumor virtual tumor board: A novel platform for the management of rare tumors [Full Article]

Summary

The Desmoid Tumor Research Foundation (DTRF) was founded in 2005 with the mission of facilitating and funding research toward a cure for DT and supporting patients with information (staging-dtrforg.kinsta.cloud). The DTRF constantly receives inquiries from healthcare professionals, patients, and family members for advice on the management of DT. Similarly, as is the case for other rare tumors, known experts in the field of DT are inundated with email queries from colleagues seeking guidance. These messages often contain limited information; yet, the recipient typically feels a moral obligation to respond resulting in recommendations that may or may not be appropriate. With the desire to meet the needs of patients with DT and physicians worldwide, the DTRF initially raised the idea with members of its Scientific and Medical Advisory Boards of creating a virtual forum for discussion of complex DT cases. The idea was then taken to the annual DTRF International Research Meeting in 2017 where the virtual tumor board was born. The mission of this virtual tumor board includes four key tenants: multidiscipline, resourceful, inclusive, and collaborative. A core group of committed discipline-specific expert panelists from pediatric and medical oncology, radiology, general and orthopedic surgical oncology, pathology and radiation oncology were identified. A web-based platform was selected with funding and operations provided by the DTRF.