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T1Detect: Learn why you should be screened

JDRF is the largest non-profit funder of type 1 diabetes (T1D) research and we are focused on treating, preventing, and curing type 1 diabetes and its complications. Until we do, we are working to help improve the lives of people living with type 1 diabetes. Type 1 diabetes is a chronic, autoimmune disease that can strike children and adults at any age. In type 1 diabetes, the body’s immune system destroys cells in the pancreas that produce insulin, meaning the body produces little to no insulin to regulate blood sugar and get energy from food. In type 2 diabetes, healthy lifestyle changes can help prevent or slow down the disease’s progression, whereas in type 1 diabetes, people require insulin to survive regardless of diet or lifestyle.

We used to believe that type 1 diabetes happened quickly, with the sudden onset of symptoms including thirst, hunger, increased urination, weight loss, and fatigue. Thanks to advances in screening and a better understanding of the human immune system, we now know that type 1 diabetes is not sudden and usually starts long before insulin is required. T1Detect is JDRF’s screening and monitoring education and awareness program. We believe everyone should know why screening is important, know how to get screened, and know what to do after they receive their results.

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Why screening matters

Being diagnosed with type 1 diabetes means a lifetime of dependence on insulin and careful management of glucose levels 24/7/365 to prevent highs and lows. JDRF has been working to prevent and cure this disease, and we are on the precipice of making it a reality. Nine in 10 people diagnosed with type 1 diabetes have no family history. Once the immune system begins to attack the insulin producing cells in the pancreas, we can detect markers in the blood (autoantibodies) that tell us a person is at increased risk. This is because the disease is otherwise asymptomatic or silent earlier on.

Have more questions? See our Frequently Asked Questions (FAQs) here.

Type 1 diabetes happens in 3 stages:

Because most people do not have a family history of type 1 diabetes, symptoms and a diagnosis often come out of the blue. And because families don’t know what to look for, many people require hospitalization at diagnosis because their blood sugars are very high, and the person is very sick.

To avoid this risk, everyone should be aware of the opportunity to test for type 1 diabetes autoantibodies. If you have positive test results, you will be able to develop a plan for further monitoring with your doctor to avoid serious complications and lower your risk for life-threatening conditions at diagnosis. You may also be eligible for current and future therapies like Tzield™, an FDA-approved disease-modifying therapy to delay clinical T1D when insulin treatment is required, but it is important to consult with your physician to determine eligibility for treatment options.

How to get screened

There are three main ways to get screened—via research, your doctor’s office, or screening at home.

Research Study: If you have family member with type 1 diabetes, the first pathway you should explore is a research study. This will put you in contact with some of the world’s leading type 1 diabetes doctors and researchers.

TrialNet: A research-based screening and clinical trial program for family members of people with type 1 diabetes. This network of experts has sites throughout the United States and screening can be done at home or in-person.

ASK (Autoimmunity Screening for Kids): provides screening for T1D and celiac disease for Colorado children and their parents with no family history.

PLEDGE (Population Level Estimate of Type 1 Diabetes Risk Genes in Children): provides screening of children younger than age 6 who are patients at Sanford Health in South Dakota.

CASCADE (Combined Antibody Screening for Celiac and Diabetes Evaluation): provides newborn screening for children born in Washington state.
Blood tests ordered by your doctor: Your doctor (or your child’s doctor) can order labs to detect T1D autoantibodies and the cost may be covered by your insurance. Testing labs that currently provide this service in the United States include:
• Mayo Laboratories
• LabCorp
• Quest Diagnostics
Enable Biosciences At-Home Test: a screening test provided in a simple kit that uses a small amount of blood from your fingertip. If the result is positive, additional confirmatory testing may be required.

Order a test

*Enable’s ordering site has recently changed, if you previously ordered your kit here, you will still be able to access your test results as normal.

Contact

For questions about T1Detect, JDRF’s screening and monitoring awareness and education program, please email t1detect@jdrf.org.

We strongly encourage you consult with your/your child’s physician for input as you make decisions about screening and monitoring. Considering various sources of expert guidance and with one’s own physician, is the best way to make personal health choices.

Already been screened?

If you’ve already been screened and are positive for type 1 diabetes autoantibodies, you can obtain confirmatory testing through our partners at TrialNet.

What to do after you get screened:

Negative Results (No Autoantibodies)	Positive Results (One or more autoantibodies)
If you are over the age of 18 and receive a negative result, the odds are low that you will develop T1D in the future. However, if you develop any symptoms (see list above), contact your doctor immediately and consider rescreening. In addition, if you or a family member have a history of another autoimmune disease, please consult with your healthcare provider for recommendations on when to repeat T1D autoantibody screening. If your child under the age of 18 tests negative for autoantibodies, you might consider testing again in the future. This is because antibodies can develop later, particularly in the case of testing a very young child. If you have a family history of type 1 diabetes, talk with your child’s healthcare provider about best next steps. You can also contact Ask the Experts or TrialNet for advice and guidance (contact information is provided below).	If you or your child was tested outside of a research study, the next step is to obtain a confirmatory test. These are the pathways available for follow up: TrialNet: An international network of leaders in T1D research and clinical care with centers in the United States and internationally. You can locate the TrialNet site near you by entering your zip code on their website. If you already have autoantibody results, be sure to tell them you are interested in confirmatory testing. If the positive results are confirmed, you may be eligible for participation in a research study including the necessary monitoring and future testing. ASK the Experts Program: A group of T1D experts who are available for people throughout the United States for follow-up advice and support. They can answer questions you have about positive test results and provide confirmatory testing. They can also provide advice about a plan for monitoring and future testing. Your doctor/your child’s doctor: A positive screening test needs to be confirmed by measuring all four T1D-associated antibodies (GAD-65 antibody, IA-2 antibody, insulin antibody, ZnT8 antibody). Other follow up tests may be requested by your doctor to check blood glucose and hemoglobin A1C levels. Additional information can be shared with this fact sheet at your/your child’s next clinic visit.

Negative Results (No Autoantibodies)

Positive Results (One or more autoantibodies)

If you are over the age of 18 and receive a negative result, the odds are low that you will develop T1D in the future. However, if you develop any symptoms (see list above), contact your doctor immediately and consider rescreening. In addition, if you or a family member have a history of another autoimmune disease, please consult with your healthcare provider for recommendations on when to repeat T1D autoantibody screening.

If your child under the age of 18 tests negative for autoantibodies, you might consider testing again in the future. This is because antibodies can develop later, particularly in the case of testing a very young child. If you have a family history of type 1 diabetes, talk with your child’s healthcare provider about best next steps. You can also contact Ask the Experts or TrialNet for advice and guidance (contact information is provided below).

If you or your child was tested outside of a research study, the next step is to obtain a confirmatory test. These are the pathways available for follow up:

TrialNet: An international network of leaders in T1D research and clinical care with centers in the United States and internationally. You can locate the TrialNet site near you by entering your zip code on their website. If you already have autoantibody results, be sure to tell them you are interested in confirmatory testing. If the positive results are confirmed, you may be eligible for participation in a research study including the necessary monitoring and future testing.
ASK the Experts Program: A group of T1D experts who are available for people throughout the United States for follow-up advice and support. They can answer questions you have about positive test results and provide confirmatory testing. They can also provide advice about a plan for monitoring and future testing.
Your doctor/your child’s doctor: A positive screening test needs to be confirmed by measuring all four T1D-associated antibodies (GAD-65 antibody, IA-2 antibody, insulin antibody, ZnT8 antibody). Other follow up tests may be requested by your doctor to check blood glucose and hemoglobin A1C levels. Additional information can be shared with this fact sheet at your/your child’s next clinic visit.

* A single autoantibody test alone is not sufficient to determine your T1D risk. It must be confirmed and complemented by other testing and advisement by a medical professional expert in T1D.

Have more questions about your results that you need answered right away? Ask the Experts is a program for health care providers and families of children living in the US who screen for type 1 diabetes associated autoantibodies. You may contact Ask the Experts anytime by email or phone for advice, support, and questions about T1D autoantibody risk screening. They can be reached by emailing Questions@ASKhealth.org or by calling 303-724-1275.

Are you a healthcare professional?

Visit our healthcare professional resource page to access both accredited and non-accredited opportunities for T1D screening education.

This education was supported by a sponsorship from the following partners.

DISCLAIMER:

Testing kits, sample analysis, and test results are not distributed, collected, conducted, analyzed, or reported by JDRF. JDRF does not assume responsibility for testing outcomes or processes. Any sponsorship from JDRF is solely for the purposes of covering at home testing costs incurred by authorized testing labs. JDRF urges testing users to speak with their healthcare provider for additional information based on the outcomes of their tests.

A single autoantibody test alone is not sufficient to determine your T1D risk. It must be confirmed and complemented by other testing and advisement by a medical professional expert in T1D.

Due to current state regulations, testing kits are currently not available for distribution to addresses in New York and Pennsylvania. We are working diligently with the lab to make testing kits accessible in these states as quickly as possible. Please check back frequently for updates, or email info@jdrf.org for more information.

Frequently Asked Questions

Why should I get screened for autoantibodies?

Type 1 diabetes (T1D) starts years before you need to go on insulin and many people get diagnosed with T1D because of a dangerous event called Diabetic Ketoacidosis (DKA). We know that screening and education with specialized medical follow up, if needed, can significantly minimize the risk of DKA at diagnosis and greatly improve your health outcomes. You could even benefit from ongoing clinical trials to prevent the disease or new therapies as they become available if you choose after consultation with your physician. Additionally – and equally important – if you have someone with T1D in your family, you are at an increased risk for developing T1D compared to someone without a known direct /immediate family connection.

Who should get screened?

If you have T1D, or someone in your family does, you or your family are at an increased risk for developing T1D. Even if you don’t have a relative with T1D, or have T1D yourself, ~93% of T1D diagnoses happen to people without a known family connection. Screening is also important for everyone of all ages. Although T1D is more commonly diagnosed in children, teens, and young adults, it can develop at any age.

What is the screening test for?

Screening tests look for the presence of proteins in your blood called Islet Autoantibodies that are markers, similar to routine tests for breast, prostate, colon and other cancers, or other diseases such as heart disease through cholesterol screening. Our goal is to establish routine screening for T1D risk as is done for other diseases, while therapies that can truly change the course of disease progression are being developed. The at-home test specifically, produced by our clinical lab partner Enable Biosciences, will look for the presence of 3 T1D specific markers: insulin autoantibodies (IAA), GAD autoantibodies (GADA), insulinoma-associated antigen-2 autoantibodies (IA-2A).

Who will know about my screening results?

Health information such as diagnoses, treatment information, medical test results, and prescription information are considered protected health information under HIPAA law. When you register for an at-home screening test-kit through our clinical lab partner, Enable Biosciences, you will have the option to share your results with your doctor and with JDRF. Any results shared with your doctor will become part of your or your family member’s healthcare record. When you opt-in to share your results with JDRF, you will be contacted with individualized support, resources, and education. Your personal information and results will be protected and will not be shared in any way without your permission.

How can I donate to type 1 diabetes research?

JDRF is the only global organization with a strategic plan to progressively remove the impact of T1D from people’s lives until it is no longer a threat to anyone. To donate to JDRF, visit https://www.jdrf.org/donate/.