Skip to main content

Patients with CHAMP1 Disorders Gain Easy Cloud-Based Access to Personal Health Data and Medical Treatment Information

CHAMP1 Research Foundation and Backpack Health Empower Patient Community for Improved Care and Streamlined Patient-Reported Data Collection

Spring Hill, FL, and Dover, MA – December 20, 2018 – The CHAMP1 Research Foundation has partnered with Backpack Health, LLC to help parents of patients with CHAMP1 disorders better manage their children’s health. With Backpack Health’s data management platform, parents can easily access their child’s health information in one centralized record and connect to critical medical resources.

The CHAMP1 Research Foundation supports parents of children with developmental delay, hypotonia, cerebral palsy, autism and epilepsy among many other diagnoses that result due to a change in the CHAMP1 gene. CHAMP1 conditions manifest with a wide variety of medical symptoms and can impact multiple body systems, creating a challenging reality for parents to navigate in order to obtain the best care for their children.

“With Backpack Health, parents can breathe a little more easily knowing that their children’s health information is consolidated and organized in one simple mobile app, removing the need to physically carry medical documentation with them wherever they go,” said Jeff D'Angelo, Vice President and Founder of the CHAMP1 Research Foundation. “Backpack Health’s platform also enables parents to share health information with their children’s teachers, caregivers, doctors and family members, making it simple to communicate their children’s needs and ensure that they receive proper care.”

“Backpack Health understands the challenges of a parent caregiver. One of our top priorities is finding user tools for parents to enable them to advocate for the best treatment for their children,” said Jim Cavan, Founder and CEO of Backpack Health. “The CHAMP1 Research Foundation’s priority is to provide educational and emotional support for those affected by CHAMP1 disorders, and we are honored to play a role in assisting the foundation in its mission.”

In addition to its health data management platform, Backpack Health’s mobile app makes it easy for patients to contribute to medical research. The platform’s ‘smart survey’ feature allows patients to easily provide consent to share anonymized health data to contribute to the latest research. To alleviate the burden on patients and caregivers, Backpack Health has also developed automatic fill, removing the need to manually enter the same data for each new clinical study.

“Patient reported data is key to our research efforts to find effective cures and treatments for disorders related to the CHAMP1 gene. We are excited to both be able to offer support to the CHAMP1 community, while simultaneously progressing in finding better cures and treatments,” said D'Angelo.

About CHAMP1 Research Foundation

The mission of the CHAMP1 Research Foundation is to improve the lives of those affected by CHAMP1 disorders through clinical research, effective treatments, public awareness, early detection, family support and patient advocacy.

About Backpack Health

Backpack Health, LLC builds secure, innovative information tools to help people manage their health journey – including wellness, illnesses, injuries, and chronic health conditions. The Backpack Health mission is to make it easy for everyone to access, own and control their health information to support better health care and attain better health for themselves, their loved ones and their communities. Backpack Health provides a platform for organizations to engage patients, collect up-to-date data and build communities around the globe. To assure data protection for its users’ information, Backpack Health complies with the EU General Data Protection Regulation (GDPR), adheres to its data protection principles, and participates in the EU-U.S. and Swiss-U.S. Privacy Shield Frameworks. Learn more at www.backpackhealth.com.