SAN DIEGO--()--The Leona M. and Harry B. Helmsley Charitable Trust and the Jaeb Center for Health Research announced today that over 12,000 people with type 1 diabetes have enrolled in the T1D Exchange Clinical Registry, making it one of the largest type 1 diabetes datasets in the United States and worldwide. The announcement was made in San Diego during the 71st Scientific Sessions of the American Diabetes Association (ADA), along with the first presentation of data from the registry. The first data from the T1D Exchange Clinical Registry, “Frequency of Self-Monitoring of Blood Glucose Is Associated with Hemoglobin A1c Levels in Youth with Type 1 Diabetes Enrolled in the T1D Exchange Clinical Registry,” was presented today at the ADA’s Scientific Sessions (Abstract number 1234-P poster session Saturday, June 25, 2011: 11:30 AM - 1:30 PM)
“The registry is growing at a very impressive pace, with about 2,000 new participants a month. We expect that this large dataset will be instrumental in helping the type 1 diabetes community gain important information about the disease”
The T1D Exchange is a three-year, $26 million project funded by the Leona M. and Harry B. Helmsley Charitable Trust’s Type 1 Diabetes Program. The T1D Exchange combines critical components of traditional clinical research with the expanding fields of health information technology and social networking. In addition to this registry, the program will also have a type 1 diabetes portal where eligible members can connect and collaborate in a social media setting. Further, a biobanking service is being developed to work in parallel with T1D Exchange to allow researchers to easily access samples from a pre-identified cohort of consented individuals.
“The T1D Exchange platform is intended to bring together individuals with type 1 diabetes, clinicians and researchers to advance the understanding of type 1 diabetes, identify challenges in treatment and control and allow easier access to meaningful disease-specific data,” said Janak Joshi, Executive Director of the T1D Exchange. “It is very exciting to see the dramatic pace at which this registry has grown in a very short period of time. This is just the beginning. At a time when the focus of healthcare in the United States is being directed at patient outcomes, the T1D Exchange is unprecedented in its potential to change the lives of those living with type 1 diabetes. We look forward to working on many studies and to launching the biorepository and the social media site, Glu, which is a new approach to social networking for people with type 1 diabetes.”
Individuals with type 1 diabetes are being enrolled into the T1D Exchange Clinical Registry at 67 centers throughout the United States. Participants span a wide range of ages, from infants under 1 year of age to adults over age 90, with representation across a broad spectrum of racial and ethnic groups. The registry also includes more than 100 participants who have had type 1 diabetes for more than 50 years. The T1D Exchange is headquartered in Boston, MA. For more information, please email email@example.com
“The registry is growing at a very impressive pace, with about 2,000 new participants a month. We expect that this large dataset will be instrumental in helping the type 1 diabetes community gain important information about the disease,” said Roy W. Beck, MD, PhD, Executive Director of the Jaeb Center. “The study we presented at the ADA meeting, which demonstrated that more frequent self-monitoring of blood glucose is associated with lower hemoglobin A1c levels in children, illustrates the important role the T1D Exchange will play by providing data that influences the dialogue on how to support better care for people with type 1 diabetes.”
“The vision of The Leona M. and Harry B. Helmsley Charitable Trust’s Type 1 Diabetes Program is to support research, treatment and care management efforts in type 1 diabetes—from basic science to grass root efforts such as summer camps for children. We believe these efforts will create enormous efficiencies that advance type 1 diabetes research and connect stakeholders within this community,” said Dana Ball, Program Director of the Helmsley Charitable Trust’s Type 1 Diabetes Program.
About the Jaeb Center for Health Research
The Jaeb Center for Health Research in Tampa, Florida, was established in 1993 as a freestanding, nonprofit coordinating center for multi-center clinical trials and epidemiologic research. The Jaeb Center’s focus is on projects involving eye disorders or type 1 diabetes. For more information, please visit www.jaeb.org.
About The Leona M. and Harry B. Helmsley Charitable Trust
The Leona M. and Harry B. Helmsley Charitable Trust, established in 1999, is administered by four Trustees selected by Leona Helmsley. As a continuation of Mr. and Mrs. Helmsley’s generous giving throughout their lifetimes, the Trust supports a diverse range of organizations with a major focus on health and medical research, in addition to programs in human services, education and conservation. Since 2009, the Trust has committed over $85 million to type 1 diabetes research and programs through the Helmsley Type 1 Diabetes Program. For more information, please visit www.helmsleytrust.org.