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[IP] T1D Exchange Clinical Registry Enrollment Exceeds 12,000



http://www.virtual-strategy.com/2011/06/24/t1d-exchange-clinical-registry-en
rollment-exceeds-12000

 

T1D Exchange Clinical Registry Enrollment Exceeds 12,000

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Friday, June 24th 2011

First results presented at ADA's 71st Scientific Sessions

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 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
<mailto:email @ redacted> email @ redacted

"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."
.
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