MYO-SHARE: Advancing Rare Disease Diagnosis Through Global Collaboration 


Challenge  

Diagnosing and treating rare diseases is a complex task that often presents barriers. The MYO-MRI consortium, a dedicated group of healthcare professionals focused on rare conditions, was limited by an outdated method of sharing crucial patient images and data. In 2019, vital images were still being transported physically on CDs, causing substantial delays and potential risks to patient data. 

Moreover, the lack of a unified platform combining genetic diagnosis, imaging pathology and muscle MRI images added to the challenge. This technology gap wasn’t exclusive to neuromuscular diseases but extended to many other disorders as well. 

Solution  

Emids, a trailblazer in healthcare technology solutions, collaborated with the Ottawa Hospital and the MYO-MRI consortium to create MYO-SHARE, a novel, cloud-based platform. This platform facilitates more efficient collaboration among clinicians working on rare diseases. Utilizing the robust framework of Emids’ HealthConnect platform and hosted on Azure, MYO-SHARE was designed using existing backend components, enabling fast deployment of this transformative tool. 

MYO-SHARE offers a secure platform for storing and reviewing patient images, with utmost respect for ethical laws and patient confidentiality. It also simplifies the sharing of intricate patient images with colleagues across the globe. In addition, MYO-SHARE has the unique capability of integrating genetic diagnosis, imaging pathology and muscle MRI images. 

Built-in data security and user management layers in the Emids HealthConnect platform ensure that MYO-SHARE is secure. By using previously tested and deployed components, the platform is not only reliable but efficient. 

Results  

MYO-SHARE’s successful implementation has significantly improved physicians and scientists’ ability to diagnose and assess the impact of therapeutic trials for patients with rare diseases. Its secure and user-friendly interface allows healthcare professionals to collaborate seamlessly, sharing complex patient images in real-time. 

The cloud-based platform not only speeds up the diagnostic process but also enhances patient outcomes. MYO-SHARE’s transformative role also extends to other diseases, showcasing its wider applicability. 

The joint efforts of the Ottawa Hospital, the MYO-MRI consortium and Emids have resulted in MYO-SHARE becoming a groundbreaking tool for the diagnosis and treatment of rare diseases globally. This is a testament to Emids’ commitment to leveraging existing and emerging technologies to make a meaningful impact on healthcare. 

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