No patient wants to hear, “There is no treatment available.” When a patient hears “no treatment available,” it can be devastating. To provide options for care, doctors at UF Health Jacksonville and the University of Florida College of Medicine – Jacksonville are searching for solutions that can turn a negative diagnosis into a positive result.
Sandeep Grover, MD, a professor and associate chair of the department of ophthalmology, is one of these physicians. An ophthalmologist and retina specialist, Grover has a focus on inherited (genetic) retinal diseases, or IRDs. He has dedicated more than 30 years of his career to providing excellent clinical care and discovering ground-breaking research for IRD patients to create a positive outcome for those struggling with visual impairment and blindness.
“These are exciting times for me and my patients,” said Grover, with an enthusiastic smile. “There used to be no treatments for these conditions, but in the past few years, we have witnessed the emergence of several treatment trials, including one FDA-approved therapy.”
In 2005, when Grover joined UF Health Jacksonville, he started a specialized clinic in the department of ophthalmology dedicated to IRD patients. Fast-forward to 2023, and the clinic is now operational one full day each week, giving patients access to new trials and clinical research. Patients travel from all over Florida, Georgia and adjoining states to receive treatment from Grover and his team.
Research that makes a difference
Grover’s highly specialized clinical research program is one of the select few in the country conducting trials for patients with IRDs.
“When I first came to Jacksonville, I envisioned this center would one day offer treatment trials for retinal diseases,” Grover said. “Throughout the years, our center has participated and continues to conduct numerous treatment trials in patients with diabetic retinopathy, macular degeneration and IRDs.”
Currently, there are five ongoing National Institutes of Health and industry-sponsored clinical trials in the department of ophthalmology for these conditions, with five more slated to start in next few months for retinitis pigmentosa, Stargardt disease, Leber congenital amaurosis, diabetic retinopathy and macular degeneration. Some trials are in the field of gene therapy.
“We are committed to try to prevent our patients from going blind and help slow the progression of deteriorating eye diseases,” said Grover, emphasizing the mission of his research. “These trials enable us to gain crucial clinical insights toward achieving that goal.”
Helping the community
Since 1993, Grover has been actively involved with the Foundation Fighting Blindness, an international not-for-profit organization that funds research for IRDs. His collaboration with the foundation played a pivotal role in the establishment of the IRD clinic. He was also named the recipient of the Career Development Award in 2005.
Grover explained that IRDs like Stargardt disease, Leber congenital amaurosis and others are conditions that many have never heard of until someone close to them gets diagnosed. He has at times had to deliver the “heart-wrenching” diagnosis of blindness in infants and explain to other patients the progressive nature of these diseases that largely have no known treatment.
For this reason, Grover, along with some patients and their family members, helped initiate a local chapter of the foundation to serve as a platform to provide social support to patients newly diagnosed with these conditions. He volunteers to serve as the education chair for that chapter.
The IRD clinic is also part of a Foundation Fighting Blindness Consortium, consisting of centers around the world dedicated to accelerating the development of treatments for IRDs.
Grover and his dedicated team have coined the slogan: “No IRD family left behind.” A large part of the work they do is to raise awareness among individuals diagnosed with these conditions as well as among ophthalmologists and optometrists in the community. He also explained that genetic testing has taken a prominent role in care.
“With the mushrooming of clinical treatment trials in the area of gene therapy for untreatable IRDs, it has become very important for these individuals to undergo genetic testing — and we offer that in collaboration with the Foundation Fighting Blindness,” he said.
Grover’s hope is that the treatments offered in Jacksonville will not only benefit patients but establish the UF College of Medicine – Jacksonville as a hub for leading-edge research and compassionate patient care in the field of ophthalmology.
“Our exceptional clinical and research teams want to get out the message to the community that patients don’t have to travel to different parts of the state or country for treatment,” Grover said. “They can receive world-class care right here in Jacksonville. We are working on expanding our patient database to prepare them for ongoing and forthcoming clinical trials.”
To learn more, visit ophthalmology.med.jax.ufl.edu.