Written and maintained by CASRAI Editorial Board
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T1D Exchange is a nonprofit organization focused on type 1 diabetes (T1D) that runs three things a research administrator is likely to meet: an online participant registry, a Quality Improvement Collaborative of endocrinology centers (T1DX-QI), and a Research Partners service line that offers study recruitment and custom research. The registry and the collaborative are different mechanisms. Participants volunteer through the first, while clinical centers contribute de-identified electronic health record data through the second. Everything below is as described on the official pages on 2026-10-29.
What it is and who runs it
T1D Exchange describes itself as a nonprofit “built with, by, and for people directly impacted by T1D,” with a mission of facilitating research and driving improvements in care for people with type 1 diabetes (t1dexchange.org, checked 2026-10-29). The organization runs its own programs. Its site is organized by audience: people with diabetes, research partners, and quality improvement centers.
- Registry: people with T1D take part in research through the T1D Exchange online registry, which can be joined at t1dregistry.org.
- Quality Improvement (T1DX-QI): a network that, per its official page, brings centers across the United States together to learn from real-world data and improve care for people living with diabetes.
- Research Partners: industry, academia, advocacy organizations and other researchers work with T1D Exchange on study recruitment, custom research and QI initiatives (research partners page, checked 2026-10-29).
Eligibility
Eligibility depends on which door you are coming through, and the official pages state it differently for each.
- Individuals: the homepage invites people with T1D to join the registry. The research partners page says recruitment connects partners with “interested individuals who meet study criteria,” so which registrants a given study reaches is set by that study’s criteria.
- Centers: the T1DX-QI page states the participation requirement in one sentence: centers contribute de-identified electronic health record data and take part in shared improvement initiatives (quality improvement page, checked 2026-10-29). The network is described as 65+ endocrinology centers around the U.S., caring for roughly 100,000 people with T1D.
- Research partners: the page names industry, academic and advocacy organizations as the partners it works with.
What it funds or requires
The official pages describe services and data access, and they do not describe a grant or award. What each route involves:
- Study Recruitment: access to the T1D Exchange Online Registry, connection to interested individuals who meet study criteria, and support for formats the page lists as survey, focus groups and in-person studies.
- Custom Research: a four-step offer: design studies that answer the right questions; execute data collection and analysis; integrate participant-reported outcomes with clinical and device data; synthesize report findings into insights.
- Real-world data: endocrinology centers in T1DX-QI securely contribute de-identified electronic health record data to a central platform, which partners can use to evaluate new technologies and care strategies.
For a sponsor or an institution, the practical meaning is that data arrives in two distinct forms: participant-reported (registry) and clinical (de-identified EHR from centers). A real-world evidence plan should say which one it relies on.
Application or compliance steps
The official pages describe the sequence each service follows rather than a single application form.
For a study team using the registry
- Define the study criteria and the format (survey, focus group or in-person).
- Discuss recruitment support with T1D Exchange through the “Discuss Recruitment Support” route on the research partners page.
- T1D Exchange connects the study with registry participants who meet the criteria.
For a center in T1DX-QI
- Contribute de-identified EHR data to the secure shared platform.
- Benchmark performance against the other centers on shared measures.
- Set goals, test and refine approaches, and track progress.
- Share what works at Learning Sessions, and document working strategies in change packages (how it works, checked 2026-10-29).
Before using QI network data, confirm with your institution whether the activity is improvement work or research. The CASRAI guide on quality improvement versus human subjects research sets out how that IRB determination is made, and the entry on de-identification explains what the data label means in regulatory terms.
Typical timeline phases
The sequence for each route, in order and without dates.
| Route | Phases as described |
|---|---|
| Custom Research | Design, then execution (collection and analysis), then integration of participant-reported with clinical and device data, then synthesis into a report |
| Study Recruitment | Criteria set, registry access, connection to matching individuals, then the study itself |
| T1DX-QI cycle | Data contribution, benchmarking, goal setting and testing, progress tracking, sharing at Learning Sessions, documentation in change packages |
Common mistakes
- Treating the registry and the QI network as one data source. The registry is people with T1D participating in research; T1DX-QI is centers contributing de-identified EHR data. They answer different questions.
- Leaving a data stream out of the protocol. Custom Research integrates participant-reported outcomes with clinical and device data, so a data management plan should name each stream. The CASRAI entry on ePRO covers the participant-reported side.
- Presenting improvement-network results as study results. The QI model is built on benchmarking and change packages, which is different from a prespecified study design. A quality improvement collaborative follows a learning model rather than a trial model.
Related programs
| Program | What the official page says | Who it serves |
|---|---|---|
| T1D Exchange Registry | People with T1D participate in research through the online registry | Individuals with T1D |
| Study Recruitment | Access to the registry to connect with interested individuals who meet study criteria; survey, focus group and in-person studies | Industry, academic and advocacy research partners |
| Custom Research | Design, execute, integrate participant-reported with clinical and device data, synthesize | Research partners |
| T1DX-QI | Centers contribute de-identified EHR data and take part in shared improvement initiatives; 65+ centers | Endocrinology centers; partners via QI partnership |
| Learning Sessions and Change Packages | Care teams review data and exchange strategies; change packages document strategies that worked | T1DX-QI centers |
The QI page lists initiative areas including CGM adoption, technology equity, mental health screening, social determinants, transition planning and DKA reduction. The organization also lists its work on a publications page.
FAQ
What is T1D Exchange?
A nonprofit focused on type 1 diabetes whose official mission is facilitating research and driving improvements in care. It runs a participant registry, the T1DX-QI center network and research partnership services.
Is the registry the same as T1DX-QI?
No. The registry is where people with T1D take part in research. T1DX-QI is a collaborative of endocrinology centers that contribute de-identified electronic health record data.
How does a study team recruit through T1D Exchange?
Through Research Study Recruitment, which gives access to the online registry and connects partners to interested individuals who meet study criteria.
What does a center contribute to T1DX-QI?
De-identified electronic health record data and participation in shared improvement initiatives, per the official quality improvement page.
Sources
- T1D Exchange, homepage, checked 2026-10-29.
- T1D Exchange, Research Partners, checked 2026-10-29.
- T1D Exchange, Quality Improvement, checked 2026-10-29.
- T1D Exchange, How the T1DX-QI works, checked 2026-10-29.
