T1D Exchange, a program of Unitio, Inc.
11 Avenue de Lafayette
Boston, MA 02111
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T1D Exchange was founded on the belief that improving outcomes in type 1 diabetes (T1D) requires a new approach—one that helps researchers conduct better research faster. Better because it’s patient-driven and more informed. Faster because T1D Exchange provides researchers with seamless access to resources they need to conduct clinical studies that advance therapies and improve clinical care.
T1D Exchange enables the entire T1D ecosystem to collaborate in truly novel ways via an innovation model that integrates:
- patient health data,
- an army of clinicians caring for more than 100,000 people with T1D and performing real-world research,
- biosamples helping scientists learn more about cause and prevention of type 1, and
- tens of thousands of people touched by T1D who share their wisdom and participate in powerful, real-world research.
The result is a single-access model that is dramatically improving the speed and success of research. Since 2009, T1D Exchange has gone from a vision to a widely-recognized resource in the type 1 diabetes medical and research community globally.
T1D Exchange continues to leverage its model in new and innovative ways to drive better, more effective collaboration among all stakeholders working for improved outcomes in type 1 diabetes. We won’t stop until there is a worry-free life for people living with type 1 diabetes where the burden of care has been lifted, quality care will be accessible, and affordable and good outcomes can be easily achieved for all.
Large-scale population-based patient registries have proven effective in engaging both industry and the clinical research community to facilitate translational solutions that can improve the quality of care in people with type 1 diabetes.
But in the U.S., no large-scale registry of type 1 diabetes patients had been established before 2010.This resulted in inefficiencies in recruitment, and duplicative research competing for limited funding. Additionally, traditional research often excludes the patient voice – creating a gap with unmet needs, unexplored opportunities in the product development pipeline, and ongoing challenges with the cost and timelines of patient recruitment—all of which add to the risk and cost of developing new treatments.
T1D Exchange was born out of the need to build a dynamic, multi-purpose, real-world patient data platform. Our strategy is to offer researchers easy access to aggregated clinical, biological, patient-reported outcomes and electronic health record data, all while fostering collaboration among patients, physicians, researchers, and industry. The result is to direct treatments and clinical care that will meet unmet needs and speed the research process by optimizing patient recruitment and input.
Strategically, we are focused on research and initiatives that can lead to “a worry-free life” in the next 10 years for people living with type 1 diabetes where the burden of daily management has been lifted, quality care will be accessible and affordable, and good outcomes are achievable by all.
T1D Exchange organizes its resources and impact into three core program areas:
Clinical Program: To improve care, health outcomes, and quality of life
Science Program: Focused on human disease; cause, effect, and heterogeneity
Patient Engagement Platform: Engaging, supporting, and empowering patients and families, and putting people’s voices and participation at the forefront of research
Its clinical program focuses on:
- driving cutting-edge research to validate, accelerate, and translate new therapies and also focus on the cause/effect of T1D,
- discovering and validating through our studies and trials which interventions will truly improve quality of life and health outcomes for T1D patients, and
- disseminating its research outcomes to accelerate product development and improve clinical care.
In the next decade, T1D will focus on promising opportunities with:
- Automated insulin delivery systems and devices
- Novel insulins and non-insulin therapies
- Cellular therapies
- Quality improvement in clinical care
- Quality of life and psychosocial research
Its science program will grow and expand its biobank and basic science resources to examine the following:
- Cause and effect
- Autoimmunity and beta cell death
- Understanding heterogeneity
- Family studies
It is also investing in advancement of early therapeutics services to support translational projects and start-ups.
Its Patient Engagement Program supports peer-to-peer connection and support for those touched by type 1 diabetes. It offers the opportunity for the community to connect and support others living with or caring for others with type 1, while contributing to research.
Fiscal year 2914, year ending 12/31/14
- Revenue: $5,825,059
- Assets: $3,022,646
- Grants: $731,115
- Gifts Received: $3,383,130
- Total Expenditures: $5,189,217
We have built four resources to support our strategy:
- Health data from 27,000+ patients revealing trends, insights and discoveries about type 1
- 75 clinics across the country with an army of clinicians caring for more than 100,000 people with type 1 and performing real-world research
- 2,000 biosamples and an additional 2,000 people who have agreed to provide biosamples on demand to help scientists learn more about cause and prevention of type 1
- Our online community, Glu, currently has over 14,500 people touched by type 1 participating online to support one another, share wisdom and learnings and participate in research. The voices and experiences of the Glu community are translated into powerful, real-world research.
Our members include the following nonprofit, pharmaceutical and biotechnology partners:
- The Leona M. and Harry B. Helmsley Charitable Trust (founding member)
- Abbott Diabetes Care
- Allegro Ophthalmic s
- American Diabetes Association
- Becton Dickinson
- Bigfoot Biomedical
- Close Concerns
- Eli Lilly
- GlySens Incorporated
- Insulet Corporation
- Locemia Solutions
- Medtronic Diabetes
- Novo Nordisk
- Tandem Diabetes Care
- William Sansum Diabetes Research Center
- Xeris Pharmaceuticals
T1D Exchange collaborates with 230 researchers and clinicians at 75 clinics across the country who care for 100,000 people with type 1 diabetes. This collaboration is critical to accelerating human studies and clinical care that will significantly impact and improve outcomes.
Registry data have been used for 60 meeting abstracts. Twenty-three manuscripts have been published or accepted for publication, one is in review for publication and six others have drafts in progress.
Unitio may have up to 13 Directors on its Board. As of Nov. 23, 2015, six seats are filled. The current board comprises experts in public health, medical device technology, biomedical science, drug development, venture capital, philanthropy and entrepreneurship.
Operating the T1D Exchange program and reporting to the Unitio Board of Directors are several strategic oversight, scientific, clinical and operational committees. They include the following:
Program Committee - a seven-member group chaired by a Director of Unitio's board. This committee sets the strategic direction of the T1D Exchange program and approves the activities of the Operating Committee. The expertise of the members cover type 1 diabetes, clinical trial, biobank and technology.
The Operating Committee - comprising three members who manage the day-to-day activities and decisions needed to ensure smooth operation of the T1D Exchange program. The members comprise the executives of the Patient Engagement Program, the Director of the Clinic Coordinating Center and the Biobank Operations Center.
Reporting to individual Executives and the Operating Committee are several subgroups with specialized expertise that meet as needed. These include:
A four-member Clinical Chairs committee that creates, reviews and approves use of the Clinic Network resources.
A seven-member Scientific Review Committee that creates, reviews and approves use of the biobank and its samples.
A seven-member Glu Research Advisory committee that reviews and discusses use of the patient engagement community, Glu.
Advisory Council - a 25-member group that meets once annually to keep pulse on the larger national and regional changes in the life science and type 1 diabetes community/research.
Finally, there an numerous task forces that meet ad hoc to address such strategic activities as fundraising, marketing, audit, finance and investment.
- CEO, Dana Ball, firstname.lastname@example.org
- Chief Medical Officer, Henry Anhalt, email@example.com
- Biobank Director, Wendy Wolf, firstname.lastname@example.org
- Director of Communication, Jill Petrie, email@example.com
- VP, Strategic and Corp Developement, George Serbedzija, firstname.lastname@example.org
- Chief Financial Officer, Jason Dana Costa, email@example.com
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- Clinical trial design and recruitment
- Facilitating patient engagement in the R&D process
- Partnering with industry