The Ehlers-Danlos Society and Backpack Health have announced a partnership to provide patients with Ehlers-Danlos syndrome (EDS) and other related rare diseases with a digital management platform to better access their medical records and data.
The platform will be accessible from mobile devices and the internet; it will also be available in multiple languages.
“There remains a gap in research and understanding of Ehlers-Danlos syndromes, hypermobility spectrum disorders, and the associated symptoms and conditions that can occur, which leads to treatment mismanagement and mistakes,” Lara Bloom, the international executive director of the Ehlers-Danlos Society, said in a press release.
To overcome these issues, the Society will work together with Backpack Health — a global company focused on secure data management and research — using its digital platform to not only empower patients to take control of their medical information, but also to enable “them to contribute to medical research by joining the EDS and HSD [hypermobility spectrum disorders] Global registry via this platform,” Bloom said.
The team also expects to be able to offer more insights on treatment approaches and services to patients and healthcare teams, based on the data gathered through the platform.
As an additional feature, the Backpack Health platform allows a user to link their profile on the platform to a medical ID bracelet. Thus, if there is an emergency, responders and clinicians will be able to use this link to access the patient’s full medical history, so that they can be better informed about what protocols to use.
“Oftentimes individuals living with rare and chronic diseases require large medical teams, extensive treatment plans, and health monitoring throughout their health journey, generating an overwhelming amount of data for patients and their care providers to manage,” Jim Cavan, president and CEO of Backpack Health, said.
“Recognizing these challenges, we are committed to easing the medical journey for those living with Ehlers-Danlos and hypermobility spectrum disorders by centralizing and consolidating intricate and detailed health information so users can feel secure knowing that they always have their full and updated medical records on hand in a time of need,” Cavan added.