Emmes, MedGenome to Speed Up Genomics-based Breakthrough Therapies

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by Mary Chapman |

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A partnership between Emmes and MedGenome seeks to accelerate development of genomics-powered therapies for people with rare diseases, such as hemophilia.

The companies plan to combine patient data into custom disease registries to improve research design and help with patient recruitment for clinical trials. In addition, they hope to produce standardized controls for advanced statistical models to measure the effectiveness of treatments.

The information collected will include epidemiological data, which deal with observed disease patterns, genomic data about a patient’s genetic makeup, and phenotypical data about observable traits.

“This is an exciting opportunity to partner with the leading genetic testing laboratory in India and South Asia to use our collective expertise to help bring faster and more innovative treatments to patients around the world who are suffering from rare diseases and desperately awaiting new therapies,” Christine Dingivan, MD, Emmes’ CEO, said in a press release.

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“The unmatched potential to build comprehensive and curated disease specific cohorts will leverage the power of large data sets to design smarter research protocols and to reduce the time it takes to identify rare disease patients for clinical trials,” Dingivan said. “Ultimately, we hope this will result in more successful treatment outcomes.”

The partnership will initially focus on Duchenne muscular dystrophy and other muscular disorders, as well as retinitis pigmentosa, a genetic disease that affects the eyes and can cause vision loss. About 5% of the approximately 7,000 known rare diseases have an approved treatment, with most addressing symptoms rather than the underlying causes.

One impediment to treatment development has been a dearth of clinical trial participants. Clinical research is at the heart of all medical advances and, among other goals, determines whether a therapy is effective and safe.

“There are so many rare diseases and, at the same time, a very small global pool of potential patients for these clinical trials,” said Traci Clemons, PhD, Emmes’ chief research officer. “Creating these disease registries across high population regions will give us an even greater opportunity to identify and recruit patients with these very rare diseases into clinical trials. These cohorts will, in a sense, offer a customized data resource for potential research sponsors, from biotech firms to large pharmaceutical companies and government research institutions.”

Emmes, which acquired U.K.-based Orphan Reach in May, recently opened a rare disease center that combines its expertise on biostatistics, data management, and clinical research with Orphan Reach’s rare-disease patient and clinical trial experience.

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“Few people realize that India and South Asia have the world’s largest population of people affected by rare and inherited disease,” Vedam Ramprasad, PhD, CEO of MedGenome, said. “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.”

“Rare disease clinical trials face substantial recruitment and regulatory challenges globally,” he added. “Our rare disease alliance with Emmes is positioned to directly mitigate these challenges and is a natural extension of MedGenome’s substantial investment to support rare disease patients and clinicians in South Asia.”

MedGenome is a genomics-driven research and diagnostics company that seeks to expand access to personalized medicine in South Asia and other emerging markets and to help improve public health. Emmes is a global clinical research organization that supports advances in public health and therapeutic innovation.