Contact: Beth Casteel, firstname.lastname@example.org, 202-375-6395
WASHINGTON and CAMBRIDGE, MASS. (Nov 09, 2015) -
PatientsLikeMe and the American College of Cardiology (ACC) 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. 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 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 the scientific discovery and development process, 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, PatientsLikeMe’s Vice President of Patient Advocacy, Policy and Safety Sally Okun 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 them.” Okun said.
PatientsLikeMe welcomes anyone living with type 1 or type 2 diabetes to join patientslikeme.com for free at www.patientslikeme.com.