PROVIDENCE, R.I. (WPRI) ─ A first-of-its-kind registry in the United States, which aims to collect data from patients with genitourinary cancers, is being developed by doctors in Rhode Island.
Doctors say New Englanders have “long experienced disproportionately high rates of bladder cancer,” but Rhode Island has the highest rate per capita.
Research shows from 2012-2016, women in Rhode Island had the highest incidence of bladder cancer in the country, and men in Rhode Island had the fourth-highest rate within the same time period.
Doctors say Rhode Island is at a “critical juncture” with its aging population, but there are opportunities for prevention, optimizing treatments and improving genitourinary cancer care in the state.
Now, thanks to a grant from the Rhode Island Foundation, The Miriam Hospital is on its way to launching a research project to better understand what may be causing these malignancies.
The Rhode Island Foundation’s Special Medical Funds program, which addresses health and the health care needs of Rhode Islanders related to a variety of specific medical conditions, provided a $25,000 grant to help support the project.
The grant will allow The Minimally Invasive Urology Institute (MIUI) at The Miriam to create a statewide, multi-institutional registry of genitourinary malignancies in Rhode Island.
The registry will allow for population-based research, based on data from anonymous medical records. Patients from all providers and insurers would be able to opt-in.
Doctors say the hope is to address treatment disparities while also identifying ways to improve efforts at prevention, screening, and diagnosis.
Dr. Dragan Golijanin is the director of the Minimally Invasive Urology Institute at The Miriam Hospital, and is one of the doctors taking lead on the project. Golijanin also serves as an associate professor of surgery (urology) at The Warren Alpert Medical School of Brown University.
“We’ve got 350-400 kidney and bladder cancer patients per year,” Golijanin said. “We also noticed in ongoing research that there are some pockets of this disease in some areas of Rhode Island that have very high incidence.”
Doctors are hoping the registry will provide more clues about potential environmental, social, economic or occupational risk factors.
Golijanin said he was curious to learn more about those working in manufacturing jobs. He says in particular, textile and metalworking industries have exposed workers to a variety of dyes, solvents, metal dust and other hazardous and carcinogenic substances.
He hopes the registry will help doctors learn several important things moving forward, including helping develop new medical guidelines and raising awareness factors.
“Is it possible to prevent? Is it possible to get better care, and also, is it possible to level disparities so we don’t see these disparities geographically, economically, or in any other way,” Golijanin said.
The annual national economic burden of bladder cancer is over $5 billion, or about $22 million per year in Rhode Island, making it one of the most expensive cancers to treat.
The Miriam’s Urology program is one of only three urology programs in New England to be ranked nationally, among the top three percent in the nation.
The MIUI was nationally ranked for urologic services for men and women, including kidney, prostate and bladder care.