Eleven centers to capture patient-reported outcomes about rare form of eye cancer
(OXFORD, England & CONSHOHOCKEN, Pa. & ROCKVILLE, Md. & ONTARIO, Canada, 4 March 2019) Immunocore Limited, a leading T cell receptor biotechnology company, and Pulse Infoframe Inc. (Pulse), with a platform healthie™ that supports patient registries, data aggregation and analytics, today announce that data collection for the first global patient registry in uveal melanoma (UM) has begun at Columbia University Irving Medical Center in New York. This effort is being co-led by Richard Carvajal, MD, from Columbia University Irving Medical Center and New York-Presbyterian Hospital, US, Joseph Sacco, MD, from the University of Liverpool, UK, and Anthony Joshua, MD, from The Kinghorn Cancer Centre, St Vincent’s Hospital Sydney, and the University of New South Wales, Australia. Ten additional centres across the US, UK and Australia are expected to open over the coming year.
Uveal melanoma is a rare and aggressive form of melanoma, which affects the eye and will metastasize in up to 50% of patients. Metastatic UM typically has a poor prognosis and currently has no accepted optimal management or treatment. , To help accelerate drug development in UM, Dr. Carvajal began collaborating with other leaders in the field on a patient registry to serve as a resource for academic medical centers and industry partners. Three years later, their vision is now a reality.
“My colleagues and I are committed to the development of a prospective uveal melanoma registry because the need for real-world insight is critical, particularly due to the rarity of this disease,” commented Richard Carvajal, MD, Director of Experimental Therapeutics and Director of the Melanoma Service at the Herbert Irving Comprehensive Cancer Center. “As the registry grows, we look forward to analysing the database and using these data to accelerate the development of new treatments for uveal melanoma.”
The patient registry is designed to provide researchers with a more comprehensive understanding of UM and important benchmarks for future research efforts. Examination of the data will also help to inform critical questions about risk factors, genetics, epidemiology, treatment cost-effectiveness and real-world outcomes, all unlikely to be answered through prospective clinical trials.
“We’re excited that the patient registry is now live and critical information that may help to advance the development of future treatments is now being collected,” commented Mohammed Dar, MD, Head of Clinical Development and Chief Medical Officer at Immunocore. “This is a great example of an academia-industry partnership with the goal to generate global data needed to broaden our understanding of uveal melanoma and the people living with this devastating disease. We thank the academic research community for their commitment and help in addressing this important need.”
“There is a real need to have data mapped to global standards to characterise clinical, biomarker and genomic data. Being able to elicit direct feedback from the patient and assess the impact of a disease and treatments on their health-related outcomes provides the holistic view of the patient journey,” commented Femida Gwadry-Sridhar, RPh, PhD, CEO and Founder, Pulse. “Using our platform healthieTM, we are honoured to support this important global initiative, building on the work we have done in melanoma for the last ten years.”