Patient-reported data will help inform research in rare form of eye cancer
Immunocore Limited, a leading T cell receptor biotechnology company, and Pulse Infoframe, Inc. (Pulse), a data aggregation and analytics company, today announce plans to support the first global patient registry in uveal melanoma (UM), a rare and aggressive form of melanoma, which affects the eye, typically has a poor prognosis and for which there is no currently accepted optimal management or treatment.1 The insights gained through the academic registry will provide a more comprehensive understanding of the disease and may help to shape the way future research is conducted.
The registry will include institutions from across the US, UK and Australia, and is currently being developed by leaders in the field of uveal melanoma, including:
- Richard Carvajal, MD, Director of Experimental Therapeutics and Director of the Melanoma Service at Columbia University Medical Center, Columbia University, US
- Joseph Sacco, PhD, Clinical Senior Lecturer at the University of Liverpool and Honorary Consultant in Medical Oncology at Clatterbridge Cancer Centre, UK
- Anthony Joshua, MBBS, PhD, Director of Cancer Services at St Vincent’s Hospital and conjoint Associate Professor with the University of New South Wales, Australia
“The rarity of uveal melanoma makes it difficult to collect the data needed to better understand how the disease manifests and evolves, and who is likely to respond to treatment and why,” said Dr. Carvajal. “For the first time we’ll have the opportunity to prospectively collect and analyse global real-world data, including patient-reported outcomes. This will help to guide medical research, innovative trial design and recruitment, potentially paving the way for accelerated treatment advances.”
Research generated from the registry will examine risk factors, genetics, epidemiology, treatment cost-effectiveness and real-world outcomes from a database of patients with uveal melanoma. The goal is to create a benchmark framework, or ecosystem, for collecting and assessing clinical outcomes, as well as providing necessary data for future genetic, sub-phenotype and biomarker research.
“We’re excited to be working with the research community to address the need for a more comprehensive understanding of uveal melanoma,” said Mohammed Dar, MD, Head of Clinical Development and Chief Medical Officer at Immunocore. “We believe that this registry will provide critical insight that may help to advance the development of future treatments, including clinical and genetic information about potential subsets of people living with this devastating disease.”
Enrolment into the registry is expected to begin in August at five sites in the US, three sites in the UK, and three sites in Australia.
“At Pulse, we strive to support the entire ecosystem that researchers, clinicians and patients require to generate the real-world evidence necessary to advance clinical outcomes, support patient advocacy and promote disease awareness,” said Femida Gwadry-Sridhar, RPh, PhD, CEO and Founder at Pulse. “We are pleased to partner with Immunocore and key academic leaders on this patient registry, which will provide a detailed look into uveal melanoma from a global perspective.”
About Uveal Melanoma
Uveal melanoma is a rare and aggressive form of melanoma, which affects the eye, typically has a poor prognosis and for which there is no currently accepted optimal management or treatment.1 Although it is the most common primary intraocular malignancy in adults, the diagnosis is rare, with approximately 8,000 new patients diagnosed globally each year (1,600-2,000 cases/year in the US).1,2,3,4 Up to 50% of people with uveal melanoma will eventually develop metastatic disease.1 When the cancer spreads beyond the eye, only approximately 40% of patients will survive for one year.1
Immunocore is a leading T cell receptor (TCR) biotechnology company working to create first-in-class biological therapies that have the potential to transform patients’ lives. The Company’s primary therapeutic focus is oncology and it also has programmes in infectious and autoimmune diseases. Immunocore has a pipeline of proprietary and partnered programmes in development. Collaboration partners include Genentech, GlaxoSmithKline, AstraZeneca, Lilly, and the Bill and Melinda Gates Foundation. Immunocore is headquartered at Milton Park, Oxfordshire, UK, with offices in Conshohocken, PA and Rockville, MD, US. The Company is privately held by a broad international investor base. For more information, please visit www.immunocore.com.
About Pulse Infoframe, Inc. (Pulse)
Focusing on rare disease and cancer, Pulse is a new style informatics company delivering real-world insights and precision knowledge through dynamic analytics and data visualization to accelerate time-to-value. Pulse aggregates data, including patient reported outcomes, from multiple sources making it available to researchers and relevant stakeholders and offers numerous benefits including dramatically improved collaboration, informing decision making and leading to advances in treatment. Pulse is headquartered in Canada, with offices in the United States, and the United Kingdom. For more information, please visit www.pulseinfoframe.com.
1 Carvajal, RD, Schwartz, GK, Tezel, T, et al., 2017. Metastatic disease from uveal melanoma: treatment options and future prospects. British Journal of Ophthalmology, 101(1), 38-44.
2 Pandiani C, Béranger GE, Leclerc J, Ballotti R, Bertolotto C. Focus on cutaneous and uveal melanoma specificities. Genes Dev. 2017;31(8):724-743.
3 Jovanovic P, Mihajlovic M, Djordjevic-Jocic J, Vlajkovic S, Cekic S, Stefanovic V. Ocular melanoma: an overview of the current status. Int J Clin Exp Pathol. 2013;6(7):1230-1244.
4 About ocular melanoma. Ocular Melanoma Foundation website. www.ocularmelanoma.org?/about-om.htm. Accessed May 2019.
Louise Conlon, External Affairs and Brand Communications Manager
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