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Shire and PatientsLikeMe Collaborate on Rare Disease Study

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According to Shire, which focuses on developing therapies for the rare disease community, the company will help users of PatientsLikeMe chronicle and share their experiences with others through digital research tools.

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April 13, 2017 | by Sarah Hand, M.Sc.

Biopharmaceutical company, Shire Pharmaceuticals and online patient support community, PatientsLikeMe, have announced that they plan to collaborate with the aim of developing a patient-centered health education platform. PatientsLikeMe is already an established resource for patients to support one another in their healthcare journey.

According to Shire, which focuses on developing therapies for the rare disease community, the company will help users of PatientsLikeMe chronicle and share their experiences with others through digital research tools. Shire also plans to match patient-reported health data with genotype and physiological data to drive research decisions regarding the development of novel therapeutics for rare diseases.

“Establishing regular connections with patients and their caregivers has been challenging for researchers studying rare diseases,” said Dr. Philip Vickers, Head of Research and Development for Shire. “We typically study patients at a specific point in time in a clinical setting that may be far from home.

“Our collaboration with PatientsLikeMe will enable Shire to understand how disease impacts patients in their own environment and integrate data from multiple sources on a single platform,” continued Vickers. “Our goal is to gather a more complete picture of the patient and caregiver experience that could potentially guide the development of new, more patient-centered treatments.”



According to Ben Heywood, PatientsLikeMe Co-founder and President, the partnership will help patients and their caregivers better manage disease symptoms and treatments, to potentially improve outcomes. For Shire and PatientsLikeMe, this data will give them a better understanding of a number of rare diseases.

“From my own family’s experience, I know that having a rare disease can be incredibly isolating. But as we’ve seen with other conditions, patients and caregivers who connect on our platform have unprecedented control and influence over their experience, and potentially their outcomes,” said Heywood. “Our work with Shire will give patients, caregivers and researchers access to new forms of data that can improve our understanding of the human condition, and help Shire align their operations behind patient-driven directives. We applaud that effort and are delighted to help drive it.”

PatientsLikeMe is the largest personalized health network in the world, and has previously formed collaborations with other pharmaceutical companies as well as government organizations. The site currently has 500,000 members, and has used clinical data collected from the community to publish over 100 research papers.

“Digital technologies are driving a major shift in healthcare, empowering patients and their caregivers to take greater control of their health outcomes, and enabling better insights into patient needs,” said Karl Hick, CIO for Shire. “The collaboration between Shire and PatientsLikeMe will create an empowered and enlightened community of rare disease patients and caregivers, and integrate cutting-edge technologies to build a full understanding of the disease and diagnostic journey.”


Keywords:  Rare Disease, Patient Community, Digital Health Technology


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