Emmes and MedGenome Launch Genomics Partnership to Advance Rare Disease Research

Global clinical research organization Emmes has entered a partnership with Indian genomics company MedGenome aimed at accelerating breakthrough treatments, powered by human genomics, for rare disease patients.

Photo: Vedam Ramprasad, CEO of MedGenome

“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,” said Emmes CEO Christine Dingivan. “Ultimately, we hope this will result in more successful treatment outcomes.”

Patients with rare diseases often have few or no treatment options with only 5 percent of the 7,000 known rare diseases having an approved treatment, making patients with rare diseases collectively one of the most underserved communities in medicine today.

Emmes and MedGenome will collaborate to combine patients’ epidemiologic, phenotypic, and genomic data into custom disease registries to enhance study design, support patient recruitment, and create standard control arms for advanced statistical models of treatment effect.

“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, chief research officer of Emmes. “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.”

Earlier in November, Emmes launched a new rare disease center, blending its expertise in biostatistics, data management and clinical research with Orphan Reach’s rare disease patient and clinical trial experience. Emmes acquired the UK-based Orphan Reach in May.

Some of the initial rare diseases that the partnership will address include hemophilia, Duchenne muscular dystrophy and muscular atrophies, and retinitis pigmentosa.

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

“Rare disease clinical trials face substantial recruitment and regulatory challenges globally. 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.”

Author: Rare Daily Staff