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Recently, we published an article titled “Data From Your CGM Could Help Change the Future of T1D Care” which provided an introduction to how big data-based research in healthcare – and in type 1 diabetes (T1D) – can unlock important areas of research that traditional methods cannot address.
Today, we have an exciting announcement: T1D Exchange is launching a new study opportunity for some of our Registry participants which will invite you to participate in research on real-world relationships between self-reported data, continuous glucose monitoring (CGM) data, electronic medical record (EMR) data, and healthcare claims data. All of this data will be “de-identified” which means it will become anonymous by removing any personal information.
The Goals of this New Study
The aim of the study is to use HIPAA-compliant, privacy-protecting techniques to “tokenize and de-identify” data from Registry participants who consent. Then each person’s de-identified Registry data will be linked with de-identified data in other big healthcare datasets.
This data linking will give us and our research partners a more complete picture of each person’s journey with T1D, all while protecting each participant’s privacy. These big healthcare data collections will include electronic medical record (EMR) data and healthcare claims data.
By combining participants’ Registry data — consisting of self-reported data from questionnaires and surveys, as well as CGM data — with EMR and claims data, we will have a more complete understanding of the relationships between the many variables we use to understand the health of people with T1D.
For example, if person A opts into this study and has already shared their CGM data with T1D Exchange, we could potentially connect this data with Person A’s electronic medical records — with total anonymity. This approach to collecting data could allow our research team to understand how time-in-range relates to the likelihood of developing other conditions, which could then lead to the development of methods and resources to help prevent those conditions.
Protecting Every Participant’s Data
T1D Exchange takes the security and privacy of everyone’s data seriously. If you are a T1D Exchange Registry participant and meet certain inclusion criteria, you may be invited in the coming weeks to participate in this study. If you choose to participate, you’ll be asked to sign a consent form. This consent form will explain the purpose of the research study and how we plan on using the data you provide.
With permission, we will use validated, HIPAA-compliant techniques to transform your personally identifiable information (PII) — such as name, date of birth, and zip code — into a “token” which is a long string of letters and numbers. This process “de-identifies” your data. Your token corresponding to your Registry data will then be matched up to your tokens which may be found in the other datasets, such as EMR datasets and healthcare claims datasets. This careful process will give us a more complete picture of your T1D journey while ensuring your privacy and total anonymity are protected.
Once the complete de-identification process has been approved by an expert team, authorized researchers will be able to use your anonymous data to help drive improvements in the care and daily lives of people with T1D.
Opportunity Coming Soon!
If you are a T1D Exchange Registry participant and meet certain inclusion criteria, you may be invited in the coming weeks to participate in this exciting new study…so be on the lookout!
If you aren’t part of our T1D Exchange Registry, join today to learn more about this study and other research opportunities.
If you have any questions about how we plan to use big data in T1D research, about this study, or about how your privacy will be protected if you participate in this study, please email Registry@T1DExchange.org.
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