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Backpack Health Launches Rare Disease Research Study in Partnership with Project Alive


Dover, MA – November 19, 2019 – Backpack Health, a free mobile and web-based multilingual digital platform giving consumers control of their health data with continuous and sharable access to their full medical record, today announced that it has launched a research study together with Project Alive to further medical research and understanding of Hunter syndrome. Using patient-reported data from Backpack Health’s Hunter Syndrome International Patient Registry, Project Alive will examine potential associations between approved and experimental therapies and toileting skills among patients with neurocognitive and attenuated forms of Hunter syndrome.

“Our focus on patient empowerment recognizes that patients and caregivers often identify the impact of a rare disease early, even before the clinician or care team,” said Jim Cavan, founder and CEO of Backpack Health. “Our partnership with Project Alive is also a collaboration with Backpack Health users in the Hunter syndrome community who are motivated to share de-identified data for the sake of medical research. We are thrilled to see the high enrollment rate from our users since we kicked off this initiative and feel encouraged by the support and enthusiasm of this community to build a brighter future.”

Hunter syndrome, also known as MPS II, is a genetic metabolic condition or lysosomal storage disorder that affects one in 100,000 to one in 170,000 individuals and is almost exclusively found in males. Individuals affected with a severe form of the condition begin to lose basic functional skills between the ages of two and four and have a shortened life expectancy.

“In the rare disease community, we often have to wait until researchers come to us with a possible treatment,” said Kim Stephens, President of Project Alive. “In this partnership with Backpack Health, the Hunter syndrome community is being more proactive and actively helping researchers collect meaningful data and find a cure.”.

Backpack Health’s customized health data management platform for Hunter syndrome helps users control their health journey with a secure centralized location for tracking, storing and sharing health information. Backpack Health users who are part of the Hunter syndrome community can now opt-in to participate in quarterly surveys. The next survey will launch on November 19, 2019.

“Giving patients more control over their own health data will change the way we approach research studies,” said Christian Hendriksz, M.D., advisor to Project Alive, Professor of Pediatrics and Child Health at the University of Pretoria with involvement in multiple clinical trials for MPS II. “With more patients enrolled in a registry, we can begin making connections and uncover insights that may have previously gone unnoticed.”

About Backpack Health

Backpack Health, LLCis dedicated to putting health data back into the hands of users to help them advocate for their needs and enable better health care outcomes. With its free mobile and web-based multi-lingual digital platform, users can securely store, manage, own and share their health information at all times. Backpack Health partners with foundations, drug and device developers, rare disease organizations and advocacy groups to engage patients, build a global community and securely collect de-identified data from users who choose to share their data. The company is GDPR-compliant to assure health data security for its users and does not share any user data with third parties, including social media companies. Learn more at

About Project Alive

Project Alive is a non-profit organization dedicated to finding a cure for Hunter syndrome (Mucopolysaccharidosis II) through research and advocacy. It is a powerful voice for children and adults with Hunter syndrome, bringing together families and advocates with researchers, industry, and regulators. Project Alive funds promising curative research, assists researchers and industry with designing research studies for our community, and advocates for the most effective and efficient system of clinical research, evaluation, and approval. Through its innovative campaigns and grassroots efforts, Project Alive has made significant advances in public awareness about Hunter syndrome and its symptoms, the need for early diagnosis, and available treatments and clinical trials

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