The American College of Cardiology and PatientsLikeMe to Bring Patient Focus to Diabetes Research and Care

Real-world, clinical insights and patient engagement central to
improving health outcomes

WASHINGTON & CAMBRIDGE, Mass.–(BUSINESS WIRE)–The American College of Cardiology (ACC) and PatientsLikeMe have
launched a partnership to explore innovative ways to make real-world
patient feedback and experience more central to diabetes research and
care. Focused on the ACC’s Diabetes Collaborative Registry®, the
partnership will encourage people living with diabetes to offer
perspectives to enhance and accelerate the registry’s research and
development agenda. The announcement was made during American Diabetes
Month and at the start of the week marking the International Diabetes
Federation’s World Diabetes Day.


The Diabetes Collaborative Registry is the first global, cross-specialty
clinical diabetes registry designed to track and improve the quality of
diabetes and cardiometabolic care delivered to patients across the
primary and specialty care continuum. The registry’s founding industry
sponsor, AstraZeneca, is also a PatientsLikeMe partner and shares the
goal to bring the patient voice into the center of scientific discovery
and development.

ACC Executive Vice President of Science, Education, Quality and
Publishing William J. Oetgen, MD, MBA, FACC, FACP said the collaboration
will bring PatientsLikeMe’s expertise and engagement experience to the
registry. “The Diabetes Collaborative Registry is focused on
transforming the quality of clinical care, prevention and treatment and
driving improvements in quality of life and outcomes for people around
the world. We want to ensure that patients and providers get the most
from the registry and from access to their health data. Our partnership
with PatientsLikeMe makes the patient voice central to science, and will
enable us to explore ways to effectively engage patients and work with
them to define potential opportunities to enhance the registry’s
impact,” Oetgen said.

The collaboration’s first step calls for the ACC and PatientsLikeMe to
reach out to people living with diabetes to identify priorities for the
registry’s research and program development agenda. Practices
participating in the Diabetes Collaborative Registry will be able to
offer their patients access to the PatientsLikeMe website so they can
become part of the online patient community, which is open to any
patient living with diabetes. Nearly 20,000 people already use the
website to connect in forums and to track and share their experiences
living with diabetes, including reporting the severity of symptoms such
as fatigue, pain and depressed mood, quality of life, and the
effectiveness of various treatments or non-drug interventions.

As part of the collaboration, Sally Okun, Vice President of Patient
Advocacy, Policy and Safety at PatientsLikeMe, will hold a position on
the Diabetes Collaborative Registry Stakeholder Advisory Panel, which
provides guidance and recommendations to the registry’s member
governance committees. Okun said the collaboration has the potential to
reach millions of patients given 1 in 3 Americans is expected to develop
diabetes during their lifetime. “We’re excited to be partnering with the
ACC given their deep experience with registries and unparalleled partner
support. We expect that patient-generated data and data from clinical
encounters will help create a vision of health for all people living
with diabetes—a vision focused on improving outcomes that matter most to
patients.”

PatientsLikeMe welcomes anyone living with type 1 or type 2 diabetes to
join patientslikeme.com for free at www.patientslikeme.com.

About Diabetes

Nearly 30 million children and adults in the United States have
diabetes, and 2 out of 3 people with diabetes die from heart attacks or
stroke. Type 1 diabetes mellitus, usually diagnosed in children and
young adults, can occur at any age when the pancreas does not produce
insulin, a hormone needed to control the body’s blood sugar levels. It
requires daily monitoring of blood glucose (sugar), insulin therapy,
diet modification and exercise. Type 2 diabetes mellitus is
characterized by insulin resistance or desensitization and increased
blood glucose levels. It is a chronic disease that can develop gradually
over time and can be linked to both environmental factors and heredity.

The Diabetes Collaborative Registry® is the first, real-world,
interdisciplinary, quality improvement-driven, clinical data registry
aimed at tracking and improving the quality of diabetes and
cardiometabolic care across the primary and specialty care continuum.
Led by the American College of Cardiology, in partnership with the
American Diabetes Association, the American College of Physicians, the
American Association of Clinical Endocrinologists and the Joslin
Diabetes Center, the Diabetes Collaborative Registry is a big data
collaboration that allows for a longitudinal study of diabetes across
all stages of the disease—including presentation, progression,
management and outcomes—even as patients receive treatment from
multidisciplinary care teams. The mission of the Diabetes Collaborative
Registry is to generate data-driven, evidence-based insights and
solutions that will transform the future of personalized, high quality
care and outcomes for people across the globe. The registry is sponsored
by AstraZeneca and Boehringer Ingelheim Pharmaceuticals, Inc. For more
information, visit TheDiabetesRegistry.org.

The American College of Cardiology is a 49,000-member medical
society that serves as the professional home for the entire
cardiovascular care team. The mission of the College is to transform
cardiovascular care and to improve heart health. The ACC leads in the
formation of health policy, clinical standards and practice guidelines.
The College operates national registries to measure and improve care. It
also provides professional medical education, disseminates
cardiovascular research and bestows credentials upon cardiovascular
specialists who meet stringent qualifications. For more information,
visit acc.org.

PatientsLikeMe is a patient network that improves lives and a
real-time research platform that advances medicine. Through the network,
patients connect with others who have the same disease or condition and
track and share their own experiences. In the process, they generate
data about the real-world nature of disease that help researchers,
pharmaceutical companies, regulators, providers, and nonprofits develop
more effective products, services and care. With more than 350,000
members, PatientsLikeMe is a trusted source for real-world disease
information and a clinically robust resource that has published more
than 60 peer-reviewed research studies. Visit us at www.patientslikeme.com
or follow us via our blog,
Twitter
or Facebook.

Contacts

American College of Cardiology
Beth Casteel, 202-375-6275
bcasteel@acc.org
or
PatientsLikeMe
Margot
Carlson Delogne, 781-492-1039
mcdelogne@patientslikeme.com

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