The Type 1 Diabetes Exchange Clinic-based Registry Network
Brief Description Of Study
T1D Exchange is a nonprofit program dedicated to improving the lives of people touched by type 1 diabetes (T1D). This program has been developed in collaboration with government agencies, JDRF, ADA, the Helmsley Charitable Trust, Clinicians, industry and people living with T1D with the overall goal of improving health outcomes. The registry involves the collection of information about individuals with type 1 diabetes. All collected information is de-identified. This information will come from the information that already is being collected for medical records. It is hoped that by putting the information together from many individuals with type 1 diabetes we can learn whether some ways of managing type 1 diabetes are better than other ways. Approximately 75 centers throughout the United States are taking part in the registry. Clinic Registry Key Facts: •Comprised of 26,000+ individuals with T1D who range in age, at time of enrollment, from less than one year to 93 years •Participants enroll in the registry database by enrolling in an ancillary Registry study, completing a questionnaire, making their medical records available, and offering additional data at annual follow-up appointments •Goal is to update key information from all participants on an annual basis and target subsets of participants with custom questions to address specific research objectives
Detailed Study Description
Direct enrollment into the registry is now closed. However; by participating in any of the T1D Registry sponsored ancillary studies being conducted at UPenn, automatic enrollment will occur. There are no separate office visits or special tests required for the registry. As a registry participant, information from medical records may be entered into the registry database at least once a year. This will include information related to diabetes treatment, blood sugar monitoring, problems that occur related to diabetes, other medical problems, blood tests that have been done, medicines that are taken, and whether anyone else in the family has diabetes or other related diseases.
Additional Information About The Study
The clinic registry may last as long as 25 years, but a member can decide to stop being part of the registry at any time. If a member leaves the registry early for any reason, the information that already has been collected will remain in the study database, but no further information will be collected for the registry. T1D Exchange Clinic Registry bolsters research and development projects and programs in type 1 diabetes by helping researchers characterize individuals living with the disease, conduct exploratory or hypothesis-generating analyses, and identify participants for future clinical studies