Orphan Reach CEO Thomas Ogorka commented: “Orphan Reach and Emmes share a passion for the research we do, a dedication to the patients in our trials, and successful, long-term collaborations with our clients. I look forward to this new chapter in our history and to further extending our leadership in rare and orphan disease research that leads to new treatment options for these patients.”

The full press release can be read here: https://lnkd.in/dusytEb

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Notes to Editors:

To learn more about Emmes, please visit: https://emmes.com/  

About Orphan Reach: As a Contract Research Organization focused on clinical trials in indications with high unmet medical need, Orphan Reach has built its reputation around delivering patient centric solutions in very challenging scenarios, particularly in rare diseases. The desire of many biotech companies to find a reliable niche CRO partner to drive their clinical development programs in orphan indications has been a major contributor to the Orphan Reach success story.

Today, the company is present in more than 70 countries globally and connected to an ever-growing patient community who are waiting for new therapies with no time to waste.

For further information, please use the following contact details | T: +44 1908 251 480 | E: info@orphan-reach.com |

The World Orphan Drug Congress USA is dedicated to the opportunities and challenges for commercialization and market potential for drugs to treat rare diseases.

Our attendees will include staff such as our Chief Research Officer, Chief Business Officer, Associate VP of Program Management Office, and Associate Director of Marketing & Communications.

You can schedule a meeting with Emmes to discuss Orphan Reach, Emmes’ Rare CRO: a dedicated division for the advancement of rare disease research and specialized clinical trial design.

Click here to schedule a meeting >

We look forward to seeing you!

The new global Rare Disease center of Emmes expects accelerating growth from US and European biotechs.

Emmes – a full service, global clinical research organization (CRO) – is launching its new center, Orphan Reach as a unique ‘rare CRO’.

The new rare disease center will incorporate Emmes’ world class reputation in public health research across the public sector and biopharmaceutical industry, with the expertise of Orphan Reach, a UK-based specialty CRO acquired by Emmes in May 2021. The addition of Emmes’ renowned biostatistics, data management, and global clinical trial execution capabilities will enable the center to function as a full, end to end services organization.

The expanded Orphan Reach is a global specialty center dedicated to the advancement of rare disease research by providing specialized clinical trial design and execution capabilities. It is expected that the Orphan Reach clinical study portfolio will double over the next 12 months, with Emmes’ joint services and technologies bringing new capabilities to the expanding rare disease drug development market.

Emmes Chief Research Officer, Traci Clemons, PhD sees the new combined organization as stronger together, adding: “Collectively, we have an incredibly strong team, bringing together deep global rare disease clinical operations capabilities with extensive scientific research experience across multiple rare disease indications. In areas such as ophthalmology, metabolic disorders, and gene therapies, Emmes has data and analytical origins spanning over four decades and a wealth of scientific publications.”

The newly dedicated center will be launched at the World Orphan Drug Congress in Barcelona, Spain on November 15th. In addition to Dr. Clemons, the center will be led by a team of senior industry executive experts in rare diseases including Thomas Ogorka, Managing Director, and Nazira Maruf, Vice President of Project Management.

Thomas Ogorka commented: “Our passion for the services we provide and the dedication we have to the patients in our trials has always been of paramount importance to Orphan Reach, and a contributing factor to our successful long-term collaborations with clients. We are excited to increase our impact within the rare disease space, especially as we broaden and deepen our service offerings through the new Emmes rare disease center. We are nimble, responsive and proactive in ensuring trials can advance more quickly through what are nearly always accelerated pathways.”

With more than 7,000 known rare diseases, biopharma customers often struggle to identify the right development partner – one who understands the unique aspects of rare disease clinical trials and can build a customized operational strategy aimed at reaching rare patients globally. Emmes’ Orphan Reach rare disease center has demonstrated success in this area and is able to leverage highly experienced global networks and resources in addition to dedicated team members in offices across Canada, US, Europe and India.

On the reasons behind the formation of the new dedicated center, Dr. Christine Dingivan, Chief Executive Officer of Emmes added:
“We want to make it easier for both rare disease focused biopharma companies and public sector research institutions to accelerate development of new treatment options for rare disease patients by leveraging a highly specialized global CRO committed to rare disease clinical research. By harnessing the invaluable experience of the combined organization in over fifty rare disease indications, we will provide greater value to patients, investigators, and clients.”

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About Emmes
Founded in 1977, Emmes is a global, full-service clinical research organization dedicated to excellence in supporting the advancement of public health and biopharmaceutical innovation. The company’s clients include numerous agencies and institutes of the U.S. federal government and a wide range of biotechnology, pharmaceutical, and medical device companies throughout the world. To learn more about how our research is making a positive impact on human health, go to the Emmes website at www.emmes.com or www.orphan-reach.com.

For media enquiries, please contact:
Alex Heeley or Abdul Khalifeh
De Facto Communications
T: +44 (0) 203 735 8168
E: a.heeley@defacto.co.uk / a.khalifeh@defacto.co.uk

“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,” said Emmes Chief Executive Officer Dr. Christine Dingivan.

“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.  Ultimately, we hope this will result in more successful treatment outcomes.”

During its recognition of Rare Disease Day on March 5, 2021, the U.S. Food and Drug Administration noted, “Patients with rare diseases often have few or no treatment options. In 2020, we continued to see significant progress in the development of treatments for rare diseases, also known as orphan products.”  In 2020, the FDA approved 32 novel drugs and biologics that had an orphan drug designation.

Traci Clemons, Ph.D., Emmes’ Chief Research Officer, explained that the two companies would 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,” she said.  “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 this month, 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.

According to a recent article in Scientific American, “Only 5% of the 7,000 known rare diseases have an approved treatment, making patients with rare diseases collectively one of the most underserved communities in medicine today.”

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

MedGenome Services CEO Dr. Vedam Ramprasad, said, “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.”

He added, “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.”

Dr. Christine Dingivan concluded, “There is no clear CRO market leader in this space.  Our acquisition of Orphan Reach, the creation of our new rare disease center, and now this strategic partnership with MedGenome, solidifies our leadership standing in rare disease drug development.”

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About Emmes
Founded in 1977, Emmes is a global, full-service clinical research organization dedicated to excellence in supporting the advancement of public health and biopharmaceutical innovation. The company’s clients include numerous agencies and institutes of the U.S. federal government and a wide range of biotechnology, pharmaceutical, and medical device companies throughout the world. To learn more about how our research is making a positive impact on human health, go to the Emmes website at www.emmes.com or www.orphan-reach.com.

For media enquiries, please contact:
Alex Heeley or Abdul Khalifeh
De Facto Communications
T: +44 (0) 203 735 8168
E: a.heeley@defacto.co.uk / a.khalifeh@defacto.co.uk