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

To the Editor: Aggressive desmoid-type fibromatosis (desmoid tumor; DT) is a rare mesenchymal tumor affecting children and adults at an incidence of 5–6 cases per million per year. ¹ In general, established management paradigms for rare tumors are often lacking which leads to individualized and inconsistent approaches to care. This creates great uncertainty and angst among providers, patients, and family members. While local institutional multi-disciplinary tumor boards have been created to achieve management consensus for just such scenarios, many practitioners, particularly those at non-academic/referral centers, lack this resource or the panel expertise for the rarest of tumors.

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 (dtrf.org). 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.

Initially, informational invitations were emailed to sarcoma providers throughout the United States requesting case and/or audience participation. Subsequent queries to the DTRF or identified DT experts have been re-directed to the tumor board organizers for a formal request to submit their case for presentation. Patients or family members are precluded from participation. Presentation guidelines are provided to each presenter in advance. Health Insurance Portability and Accountability Act compliance is followed with all personal health information removed from the presentations which are reviewed in advance. Meetings occur quarterly with the first session taking place in December 2017. Typically, 3–4 cases are presented at each session.

Within the first year, it became quickly apparent that we needed to expand to incorporate international participation. To facilitate this, the time of the tumor board was moved to 11:00 am Eastern Time to best accommodate the worldwide time zones acknowledging that no time would be ideal for all. Beginning in August 2019, presenters have been asked to complete a referral form (Figure 1). These forms are then returned to the presenter following the virtual session with a summary of the medical tumor board recommendations. Since it is critical to understand the outcome of the advice provided and if the tumor board is accomplishing its stated mission, we request and are accumulating follow-up data on previously presented cases. At the time of this publication, 11 tumor boards have taken place including 39 patient presentations. A summary of case demographics is provided (Table 1).

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Figure 1.

DTRF virtual tumor board referral form template.

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Table 1.

Overview of DTRF virtual tumor cases since inception in 2017.

Age	Sites of disease	Associated syndromes	Country
Range: 1–65 years	Extremity (12)	Familial Adenomatous	United States (27; 15 states)
	Abdominal wall (8)	Polyposis (3)	England (4)
	Multifocal (7)	Gardner’s (3)	India (2)
22 cases <18 years	Head and neck (6)		Portugal (1)
			Australia (1)
	Intra-abdominal (3)		Iran (1)
			Ireland (1)
17 cases ⩾18 years	Other (3)		Italy (1)
			New Zealand (1)

Since undertaking this endeavor, a number of anticipated and unanticipated sequelae have been observed. As hoped, feedback from presenters, patients, and family members has been overwhelmingly positive as they find this to be an invaluable service and are greatly appreciative of our efforts. Available and evolving evidence-based consensus guidelines and education are being disseminated during these sessions which will foster a better understanding of the disease and facilitate incorporation of best practices for patients with DT. ² Unexpectedly, other rare tumor grassroots organizations have reached out for advice on how to duplicate similar endeavors which was the primary impetus to publish our experience.

In general, rare tumors often face the challenge of limited clinical trial and research opportunities which hinders the development of well-established management strategies. Virtual tumor boards provide a unique and cost-effective platform to reach more people and provide expert advice in a more formal scientific forum. As far as we know, this project is the first of its kind for an individual tumor type and could serve as a model for other rare diseases.