The T1D At Risk Registry was developed by TrialNet, a network of the world’s leading T1D researchers who are exploring ways to prevent and slow the progression of the disease.
The T1D At Risk Registry is for children and adults up to 45 years of age, with increased risk for developing type 1 diabetes (T1D).
You are eligible to participate if you have any of the following risk factors:
You are not eligible to participate in the registry if you have been diagnosed with diabetes, except for diabetes that only occurred while you were pregnant (gestational diabetes), are currently in another study monitoring your diabetes risk or studying a treatment to prevent or delay T1D, have received treatment to prevent T1D such as TZIELD (teplizumab), or have a disease that is known to result in diabetes such as pancreatic disease or cystic fibrosis.
You will be asked to read and provide consent online to participate in the T1D At Risk Registry. You will be asked to provide information about yourself, your health, and how learning that you are at increased T1D risk has affected you and the decisions you make about follow-up testing. You will also be asked to enter test results from T1D screening tests and follow up testing. We may contact you to update your information or to communicate about opportunities to participate in research studies.
The only risks of participating in the T1D At Risk Registry is the confidentiality of the information that you provide and how learning about your T1D risk level might affect you.
The T1D At Risk Registry will create a password protected account for you to enter information. This information will be stored in a secure database using state-of-the-art technology to protect your confidentiality.
You can access that information and the recommendations for additional testing by using your secure email address and password. You may receive follow-up questions or information about new studies from the Registry. Your personal identifying information, such as your name or date of birth, will not be shared with anyone outside the Registry. The laboratory and testing results, without your personal identifying information, will be used to learn if people follow the testing recommendations and whether, by doing so, complications at the onset of T1D are reduced.
By joining the T1D At Risk Registry you are already aware that you are at increased risk of developing diabetes. Learning from the test results that you provide that your diabetes risk is increasing may cause you emotional distress. We recommend that you discuss your feelings with your health care provider, recognizing that this information may be recorded in your medical record. The information that you provide to the Registry is not available to insurance companies or any outside individual or group.
By joining the T1D At Risk Registry you will learn about T1D risk based on information and test results provided by you and how it changes when additional test results are known. You will receive expert recommendations about additional tests to monitor your T1D risk. Other studies have shown that close monitoring can reduce complications should T1D result. We will also inform you about research studies designed to test new ways to delay or prevent progression to T1D and to preserve insulin production once T1D has been diagnosed. By joining, you will help us understand T1D and learn better ways to monitor diabetes risk and how it changes over time. This may benefit other people at risk in the future.
There is no cost to join. Payment will not be provided to cover follow-up testing. The hope is that this information will result in close monitoring to prevent complications should you develop T1D.
TrialNet is a network of the world's leading T1D researchers who are exploring ways to prevent and slow the progression of the disease. The T1D At Risk Registry was developed by TrialNet and is supported by the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) of the National Institutes of Health.
Learn more about TrialNet
Type 1 diabetes (T1D) is a disease of the immune system, the body’s system for fighting infection. In people with T1D, the immune system mistakenly attacks healthy insulin-producing cells, called beta cells, and destroys them. This results in the pancreas making little or no insulin, causing high blood sugar levels.
Type 1 diabetes symptoms can appear suddenly and may include:
T1D symptoms are caused by high levels of sugar (glucose) in the blood and may be mistaken for severe flu or another illness. T1D symptoms may come on and be life-threatening. If you or someone you know has symptoms of T1D, be sure to get medical attention right away.
The exact cause of T1D is unknown. The body's immune system— which normally fights harmful bacteria and viruses— mistakenly destroys insulin-producing cells in the pancreas. Genetics play a role in this process. Certain environmental factors may trigger T1D. Research is underway to find what causes T1D and how to stop it.
The T1D At Risk Registry Takes Your Data Security SeriouslyAll your information will be stored in our secure database using state of the art technology to protect your confidentiality. |
