Immunocore and Pulse Infoframe are set to partner with academic institutions to launch first global patient registry for uveal melanoma (UM).

UM is a rare and aggressive form of melanoma, affecting the eye and typically has a poor prognosis for which there is no currently accepted optimal management or treatment.

The insights gained through the academic patient registry will provide a better understanding of the disease and support further research.

The registry, which is currently being developed by experts in the field of UM, will include institutions from across the US, UK and Australia.

Columbia University Medical Center Melanoma Service managing director and director Richard Carvajal said: “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.

“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.”

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Research generated from the registry will analyse risk factors, genetics, treatment cost-effectiveness and real-world outcomes from a database of patients identified with UM.

The two companies aim to create a standard framework for collecting and examining clinical outcomes, and providing necessary data for future genetic, sub-phenotype and biomarker research.

Immunocore chief medical officer and Clinical Development head Mohammed Dar said: “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 start next month at five sites in the US, three sites in the UK, and three sites in Australia.