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Emmes, MedGenome Partner on Rare Disease Patient Data Registry Project

NEW YORK — Clinical research organization Emmes said on Monday that it has partnered with MedGenome to create rare disease registries to help support clinical trials.

Under the terms of the deal, the companies will work together to create custom registries of rare disease patients, including their epidemiologic, phenotypic, and genomic data, that can be used for clinical study design, patient recruitment, and to develop standard control arms for statistical models of treatment effect. Specific diseases that will be addressed include hemophilia, Duchenne muscular dystrophy, muscular atrophies, and retinitis pigmentosa.

Financial terms of the collaboration were not disclosed.

"The unmatched potential to build comprehensive and curated disease-specific cohorts will leverage the power of large datasets to design smarter research protocols and to reduce the time it takes to identify rare disease patients for clinical trials," Christine Dingivan, CEO of Rockville, Maryland-based Emmes, said in a statement. "Ultimately, we hope this will result in more successful treatment outcomes."

MedGenome focuses on expanding access to genetic testing for populations in South Asia and other emerging markets and has built a large database of South Asian genetic variants through its research partnerships and work as a cofounding member of the GenomeAsia 100K initiative, as well as through its use of genetic diagnostics in India.

"Few people realize that India and South Asia have the world's largest population of people affected by rare and inherited disease," said MedGenome Services CEO Vedam Ramprasad in the statement. "Given the high unmet need of these patients and families, we are dedicated to expanding support and opportunities for the rare disease community in South Asia to contribute to, and benefit from, the substantial treatment advances being made in rare disease globally."

In July, the Foster City, California-based firm received a $16.5 million investment from International Finance Corporation to expand COVID-19 testing in India.

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