STOP T1D Registry
The purpose of the REGISTRY is to improve the quality of screening and monitoring for type 1 diabetes (T1D) in the United States. We are doing this by collecting information from people who have been screened and tested positive for presymptomatic T1D (autoantibodies), regardless of whether they have been later diagnosed with symptomatic Stage 3 T1D. For patients under 18 years, we are asking that their parents/legal guardians provide the information on their behalf.
Your experience with screening is important for us to better understand the barriers and limitations faced by people who test positive for T1D autoantibodies. The data you provide will be stored in a secure database at the BDC and used for the stated purpose described on the consent-page.
NOTE: Prior to any analyses, your data will be de-identified—meaning that ANY information that could identify you will be removed.
If you agree to participate in the REGISTRY, we will share information that may be of interest, including:
1. Clinical guidelines of how your condition should be managed;
2. Availability of approved or experimental treatments to delay progression to insulin-dependent
diabetes; and
3. Contact information to enroll in clinical trials.
To join the REGISTRY, you confirm that you meet these participation qualifications:
• Be at least 18 years old and test positive for one or more type 1 diabetes autoantibodies; OR
• Be a parent/guardian of a child under 18 who tested positive for one or more type 1 diabetes autoantibodies
• Understand English
• Reside in the United States
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If you choose to participate, you will be asked to complete an online questionnaire that includes your demographic information and limited medical history related to autoantibody testing and diabetes. It will take only 5-10 minutes. You will be asked to update this information annually.
