One of the challenges of studying rare tumors is the fact that they’re rare – there are few patients for physicians and scientists to study and patients are located throughout the country (and the globe), not centered near one institution. From the patient’s perspective, it’s difficult to visit the variety of specialists that are often required to manage the medical care of a patient with a rare tumor. Tumor boards serve to alleviate these challenges. They can help advance rare tumor research and provide an opportunity for better patient care.
What are tumor boards? Tumor boards are panels of expert physicians and specialists who meet to review patient medical records, share expertise, explore potential treatment options, and learn more about a particular type of tumor. MyPART physician Dr. Mary Frances Wedekind explains that tumor boards are important because “[they] bring together multiple disciplines of medicine (i.e. radiology, pathology, oncology, radiation oncology) to have comprehensive discussions about a patient’s diagnosis and their treatment to ensure the best plan moving forward.”
In this digital age, tumor boards can also be virtual! This is a powerful tool for physicians caring for patients with rare tumors, because it can allow physicians, specialists, and researchers, to connect from all over the world with one phone call to review medical records and share expertise. Dr. Wedekind adds, “In some cases, tumor boards include physicians from all across the country or world to share knowledge and make the best decision for the next step in therapy,” which benefits patients and physicians.
Dr. Wedekind says, “Tumor boards are especially important for rare tumors as there are rarely standardized guidelines for treatment [like there are for] more common tumors. Utilizing tumor boards to discuss patients with rare tumors will help physicians make the correct diagnosis and [determine] therapy options, and in return will help patients with rare tumors.” Tumor boards also allow physicians to see more patients with a rare tumor than they might be able to see at their single institution, which helps advance physicians’ knowledge about rare tumors and may help researchers focus in on important research questions.
MyPART participates in tumor boards through our rare tumor clinics for chordoma, gastrointestinal stromal tumor (GIST), and medullary thyroid cancer. Patients are invited to the NIH Clinical Center in Bethesda, Maryland to meet with a panel of experts and receive recommendations for their medical care. When possible, MyPART collaborates with advocacy organizations to reach patients who would benefit from tumor boards. Since 2008, the NIH has collaborated with The Life Raft Group to host the annual GIST Clinic (with the exception of 2020). In 2019, MyPART worked closely with The Chordoma Foundation to host the first Pediatric Chordoma Clinic. Advocacy organizations are important partners in organizing rare tumor clinics and tumor boards because they know best about the needs of their communities and can identify patients who would best benefit from tumor boards. MyPART looks forward to hosting in person clinics and tumor boards as the pandemic improves. Learn more about our rare tumor clinics here.
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