Global Society Created for Rare Genitourinary Tumors

According to the National Cancer Institute, rare cancers are classified as those that occur in less than 6 in 100,000 individuals per year.Rare genitourinary cancers include penile, testicular, and bladder cancers with variant histology that occur in fewer than 15 of 100,000 patients annually.

Philippe Spiess

Andrea Necchi

Approximately nine months ago, a group of oncologists led by Philippe Spiess, M.D., assistant chief of surgical services and senior member in the Department of Genitourinary Oncology at Moffitt Cancer Center in Tampa, Florida, and Andrea Necchi, M.D., chief of genitourinary medical oncology at San Raffaele University in Milan, Italy, launched the Global Society of Rare Genitourinary Tumors.

In an interview with MHE, Spiess said that the idea of creating the worldwide organization for rare genitourinary tumors surfaced about a year ago as research revealed showed that people with these rare cancers had unmet needs, especially in South America and India. Spiess said the society has subcommittees that focus on particular cancers, one of which is urothelial cancer. Overall, the society has attracted a great deal of interest — and membership: “There are close to 300 members in GSRGT (Global Society of Rare Genitourinary Tumors), and it keeps growing,” said Spiess.

The primary goal of the society is to bring together experts from low- and high-income countries to develop clinical practice guidelines that meet the needs of a culturally diverse patient population while providing consistent care globally. Barriers to positive health outcomes that will be addressed include limited funding for research, small study sample sizes, a shortage of accessible cancer registries and tissue banks, and limited access to effective treatment options.Additional goals include improving research and patient education and standardizing treatment, while advancing personalized care. Individuals leading GSRGT include international healthcare experts, researchers, and a patient advocate.

The organization hosted a virtual global conference December 2020 on pipeline treatments and developing practice guidelines for penile and testicular cancers, and it was attended by over 350 individuals from 15 countries.

A virtual summit is scheduled for October will specifically focus on upper tract urothelial cancer and on variants of kidney cancer,” said Spiess. The chairs for that event are Toni Choueiri, M.D., director of the Lank Center for Genitourinary Oncology at the Dana-Farber Cancer Institute in Boston, and Sharokh F. Shariat, M.D., the department chair and professor of urology at the University of Vienna in Austria. Shariat also has an appointment at the Weill Cornell Medical College in New York City.