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PatientsLikeMe, Shire working together to study rare genetic diseases

The multi-year deal involves the two companies working together to engage patients and caregivers at every stage of their journey.

PatientsLikeMe, Shire working together to study rare genetic diseases

PatientsLikeMe and Shire have teamed-up to support the development of a patient-centered, real world health learning system that expands understanding of patient health and disease.

The multi-year deal involves the two companies working together to engage patients and caregivers at every stage of their journey. As part of the deal, digitally-enabled research communities and tools will be created to help those struggling with a rare disease to track and share their experience with others living with the same condition. It will also connect patient-generated health data with genotype and physiological data to enable research outcomes in order to help Shire better meet the specific needs of patients with rare diseases.

"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," Philip Vickers, PhD, Head of Research and Development for Shire, said in a statement. "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."

PatientsLikeMe Co-founder and President Ben Heywood is also pleased with the deal, adding that it will give patients and caregivers new ways to understand their symptoms, treatment impacts and quality of life over time, and new insights into how to improve their outcomes.

"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," he said.

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