PatientsLikeMe and Shire Pharmaceuticals collaborate to study rare genetic diseases

ShirePatientsLikeMe and Shire plc (LSE: SHP, NASDAQ: SHPG) have announced a new collaboration that will support the development of a patient-centered, real world health learning system that expands understanding of patient health and disease. Shire, the global leader in rare diseases and other highly specialized conditions, will work with PatientsLikeMe to appropriately engage patients and caregivers at every stage of their journey. Through the creation of digitally-enabled research communities and tools, this multi-year collaboration will 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.

Philip Vickers, PhD, Head of Research and Development for Shire, said working with PatientsLikeMe will help the company overcome some of the traditional challenges inherent in understanding rare diseases. "Establishing regular connections with patients and their caregivers has been challenging for researchers studying rare diseases. 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. 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 said the collaboration 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. It will also help both companies advance research for a deeper and more collaborative understanding of health and disease.

"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," Heywood said. "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."

Karl Hick, CIO for Shire, said that "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. 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."

About PatientsLikeMe
PatientsLikeMe, the world’s largest personalized health network, helps people find new options for treatments, connect with others, and take action to improve their outcomes. The company has worked with every major pharmaceutical company and a range of government organizations to bring the patient voice to research, development and public policy. With more than 500,000 members, PatientsLikeMe is a trusted source for real-world disease information and a clinically robust resource that has published more than 100 research studies.

About Shire
Shire is the leading global biotechnology company focused on serving people with rare diseases and other highly specialized conditions. We strive to develop best-in-class products, many of which are available in more than 100 countries, across core therapeutic areas including Hematology, Immunology, Neuroscience, Ophthalmics, Lysosomal Storage Disorders, Gastrointestinal/Internal Medicine/Endocrine and Hereditary Angioedema; and a growing franchise in Oncology.

Our employees come to work every day with a shared mission: to develop and deliver breakthrough therapies for the hundreds of millions of people in the world affected by rare diseases and other high-need conditions, and who lack effective therapies to live their lives to the fullest.

Most Popular Now

Novartis confirms 5 year data for first and only f…

Novartis, a global leader in Immunology & Dermatology, confirmed today positive 5 year efficacy and safety results for Cosentyx® from a Phase III long-term extension stud...

Researchers develop microneedle patch for flu vacc…

A National Institutes of Health-funded study led by a team at the Georgia Institute of Technology and Emory University has shown that an influenza vaccine can produce rob...

Jardiance® (empagliflozin) analysis reinforces est…

An analysis of pooled safety data from 15 studies plus 4 extension studies involving more than 12,500 adults with type 2 diabetes demonstrated treatment with Jardiance® (...

Alzheimer's and Parkinson's spurred by same enzyme

Alzheimer's disease and Parkinson's disease are not the same. They affect different regions of the brain and have distinct genetic and environmental risk factors. But at ...

Researchers publish new findings on influence of h…

Poor diet is associated with 80% of colorectal cancer cases, but the exact pathways by which diet leads to cancer are not known. In a newly published study, Cleveland Cli...

Merck awards €1.25 million to research projects th…

Merck, a leading science and technology company, today announced its commitment to award €1.25 million to research projects in the field of fertility, supporting the adva...

FDA tackles drug competition to improve patient ac…

Today, the U.S. Food and Drug Administration is taking two new, important steps to increase competition in the market for prescription drugs and facilitate entry of lower...

Trials show unique stem cells a potential asthma t…

A study led by scientists at Monash University has shown that a new therapy developed through stem cell technology holds promise as a treatment for chronic asthma. The Mo...

Roche acquires mySugr to form a leading open platf…

Roche (SIX: RO, ROG; OTCQX: RHHBY) and mySugr have signed an agreement under which Roche acquired all shares of mySugr GmbH. Counting more than one million users globally...

Older Americans don't get - or seek - enough help …

The majority of Americans over age 50 take two or more prescription medicines to prevent or treat health problems, and many of them say the cost weighs on their budget, a...

Novartis CAR-T cell therapy CTL019 unanimously (10…

Novartis announced today that the US Food and Drug Administration (FDA) Oncologic Drugs Advisory Committee (ODAC) unanimously (10-0) recommended approval of CTL019 (tisag...

New brain cancer drug targets revealed

Researchers from Case Western Reserve University School of Medicine and The Cleveland Clinic designed a way to screen brain tumor cells and identify potential drug target...

Pharmaceutical Companies

[ A | B | C | D | E | F | G | H | I | J | K | L | M | N | O | P | Q | R | S | T | U | V | W | X | Z ]