Written by: Shahd Husein
Posted on: November 8, 2018
New Website Puts Patients at the Center of Accelerating Innovation and Improving Care
BOSTON – Nov. 8, 2018 T1D Exchange today announced the launch of a new T1DExchange.org website featuring cutting-edge connectivity to better serve the type 1 diabetes community and leverage technology to accelerate therapies and improve care for people affected by type 1 diabetes.
Approximately 1.25 million people in the U.S. live with type 1 diabetes, a disease in which the body does not produce insulin. Not only is there no cure for type 1 diabetes, there are few other diseases that require such an intense level of constant care and management.
“T1D Exchange was founded on the belief that improving outcomes requires better, faster, patient-driven research that produces the real-world evidence needed to advance promising therapies, improve access to care, and influence reimbursement for that care,” said endocrinologist Dara P. Schuster, MD, CEO of T1D Exchange. “What we are announcing today is more than just a website. It is the most advanced platform in the type 1 diabetes community to put patients at the forefront and to give them the resources they need to live better.”
T1DExchange.org is a user-friendly, easy-to-navigate, one-stop resource for the type 1 diabetes community featuring:
- Vetted and validated content
- Regular questions and answers, polls and results on issues facing people with type 1 diabetes
- News about the latest advances in care
- Regulatory and public policy updates
- Easy connectivity for users to share content on social media
- Direct connectivity to T1D Exchange Glu, the online community of more than 23,000 active users
- A gateway to the T1D Exchange Biobank, a collection of biological samples used by researchers and linked to the data of more than 2,200 people with type 1 diabetes
Additionally, T1DExchange.org will soon include new features that are especially important to advancing and accelerating care for type 1 diabetes.
- A more robust and expanded T1D Registry that gives people with type 1 diabetes opportunities to participate in the latest T1D Exchange-research aimed at accelerating care solutions, and influencing public policy and insurance regulations. Since 2010, more than 35,000 people with type 1 diabetes have registered to participate in research through T1D Exchange resulting in more than 75 published studies.
- A Quality Improvement portal where participating clinics can upload full data on patient outcomes and the state of care. This data will be used to identify best practices, gaps in access to care, and reimbursement and public policy issues.
- Future connectivity to the Tidepool Big Data Donation Project that shares de-identified diabetes device data with researchers, device makers and other innovators working to advance diabetes care.
“Until today, I have had to go to multiple sources to find information and resources to connect with others in the type 1 diabetes community, or to learn about the latest research and be a part of it,” said Jack Collins, a T1D Exchange board member and a type 1 diabetes patient. “The new T1D Exchange platform gives me all of that without having to search and click around the web.”
“It is so difficult sometimes to find the myriad of data we as researchers need to advance a study or start a new one,” said Alborz Mahdavi, PhD, Founder and CEO of Protomer Technologies and winner of the top prize in the 2018 T1D Exchange Diabetes Innovation Challenge. “The platform’s single source access to this data will accelerate our ability to uncover more about type 1 diabetes and develop new therapies to improve care.”
Work on the new web platform, including the integration and rebuilding of new and existing functionality, has taken more than six months and was made possible through the generous support of The Leona M. and Harry B. Helmsley Charitable Trust.
About T1D Exchange
T1D Exchange is a nonprofit, research organization dedicated to accelerating therapies and improving care for people affected by type 1 diabetes. T1D Exchange actively supports discovery and innovation through its biobank and patient data. At the same time, the organization understands that evidence gathered in the “real world” can help bridge the gap between discovery in research settings and impact in people’s lives.
T1D Exchange model uses cutting-edge tools, research methods, and a robust IT platform to gather evidence from the real-world and clinical experiences of people living with type 1 diabetes. The goal is to connect biological samples, medical data, and patient insights to all stages of research and development, expediting the development of therapies and better care for everyone affected by type 1 diabetes.