Shire, a global biotechnology company focused on rare diseases, has formed a strategic alliance with Microsoft, the European Organisation for Rare Diseases (EURORDIS), and Rare Diseases Europe, a rare disease patient organisation, in order to address the diagnostic challenges for patients living with rare diseases.
This alliance has been named the ‘Global Commission to End the Diagnostic Odyssey for Children’ and, according to data and analytics company.GlobalData, is said to signal the arrival of tech companies into the healthcare space as they attempt to revolutionise the healthcare market.
The aim of the organisation is to address the diagnostic challenges associated with rare diseases, provide support, and shorten the time it takes for patients and their families to reach a conclusive diagnosis, as it usually takes around five years for rare disease patients to receive the correct diagnosis, and in some cases takes up to 10 years.
According to the European Medicines Agency (EMA) it's estimated that approximately 300–350 million people across the world are affected by rare diseases, half of whom are children.
Alessio Brunello, MSc, GlobalData neurology & ophthalmology analyst, commented: “This is a powerful alliance capable of developing game changing diagnostic tools and initiatives for rare disease patients, allowing the use of optimal therapies which will present opportunities for drug developers. The accurate and early detection of diseases, as well as their differentiation from other disorders, are essential for both proper disease management and the improvement of the treatment rate.”
The ‘Global Commission’ is a multi-disciplinary group of experts with the creativity, technological expertise, and commitment required to develop a roadmap to help the rare disease field shorten the current multi-year diagnostic journey, and to make a major difference in the lives of millions of children and their families. The roadmap, called ‘Odyssey’, will include recommendations to solve key problems presently standing in the way of timely diagnoses.
The Global Commission believes Odyssey will be able to do that in three points: first, providing high-level policy guidance to help achieve better health outcomes for rare disease patients; second, improving physicians' ability to identify and diagnose patients with a rare disease in order to begin care and treatment; third, to empower patients and their families to have a more active role in their healthcare, and provide policy guidance to governments and healthcare systems to help achieve better outcomes for rare disease patients. The Global Commission is expected to publish this roadmap in early 2019. The roadmap will include the findings of its collective work with patients, their families, and other expert advisors to help drive solutions to improve the diagnosis of rare diseases.
Brunello concluded: “This initiative could be the first of many alliances and partnerships in 2018, as several other tech companies also attempt to revolutionise the healthcare market.”
