As a parent living with type 1 diabetes, it is impossible for me to watch my child vacuum up a meal or gulp down a glass of water without getting worried. Even something as simple as an extra heavy diaper or a long nap can be enough to trigger that paranoia.
For parents like me and for others out there who have a type 1 in the family, free screening resources for these types of genetic diseases can help ease much of that worry.
If you’ve ever caught yourself focusing on symptoms in your child that may or may not be there or have yourself wondered if you are at risk of developing T1D, here are some great resources worth looking into.
TrialNet Screening for Relatives of T1Ds
Type 1 Diabetes TrialNet is a group of physicians, scientists, and healthcare professionals who are working to better understand the genetic predisposition, development, prevention, and treatment of type 1 diabetes.
In their quest to better understand how this disease operates and how it can be better treated, they provide free T1D screenings for relatives of people with type 1.
Who Qualifies for TrialNet?
TrialNet’s free screening is available for:
- Anyone from the age of 2.5 (3 for those in the United Kingdom) to 40 years of age who have a direct T1D relative (parent, sibling, or child)
- Anyone from the age of 2.5 (3 for those in the United Kingdom) to 20 years of age who have a more removed relation to someone with diabetes (aunt/uncle, cousin, grandparent, niece/nephew, or half-sibling)
TrialNet has testing facilities available around the world and also provides in-home test kits that can be mailed in. These in-home kits require only ten drops of blood and are generally easy to collect yourself. However, if the results are inconclusive or positive, you will need to visit a testing facility in person for a second test.
What Do Your TrialNet Results Mean?
Once TrialNet has your sample, they will test it for all known T1D autoantibodies.
Those who test negative for all these antibodies are unlikely to develop type 1 and will not need to be tested again. There is still some possibility of developing the condition later on, but this risk is greatly reduced.
For those who test positive for a single autoantibody, their odds of developing type 1 are much greater. If you fall into this category, TrialNet will want to retest you in a year to look for additional autoantibodies. They will also let you know if you qualify for any prevention studies that might decrease your odds of actually developing the disease.
Those who test positive for more than one autoantibody are considered to already have type 1 diabetes. Further diagnostic tests will be performed to determine the stage of the disease and your eligibility for available prevention or treatment studies.
If you are interested in learning more about TrialNet or want a list of testing locations or instructions on how to get your home test kit, you can visit their website here.
Alternative Free T1D Screening Options for Children
While TrialNet continues to be a great resource for type 1 parents and for those with type 1 relatives, it can’t provide peace of mind to everyone.
After my own type 1 diabetes diagnosis, I learned that the only other person in my family who had the condition was my mom’s cousin. Even if we had been aware of the option or need for type 1 screening, I would have never qualified for the free test through TrialNet.
Luckily, for children living in my home state of Colorado, there is a new option for diabetes screening.
ASK—Autoimmune Screening for Kids–is a program run out of the Barbara Davis Center for Diabetes in Aurora, Colorado. The team of doctors behind the new screening initiative is hoping to learn more about the development of common childhood autoimmune disorders by opening up screening to all children ages 1 to 17, regardless of if they have a family history of diabetes.
In addition to testing for type 1 autoantibodies, the ASK program also tests for Celiac’s Disease markers, a disease that affects about 1% of the general population and about 6% of type 1 diabetics.
Anyone who tests positive for autoantibodies of either disease in this study will be provided free follow-up services to help educate parents on identifying symptoms of disease onset and guiding them toward prevention resources.
Screening Tests Save Lives
Currently, the ASK program is only available to Colorado residents. And, unfortunately, it is one of the few free screening services available to children without a type 1 connection.
Because type 1 diabetes is so often diagnosed only after severe symptoms such as DKA are present, screening services like this one and TrialNet are vital in reducing the damage and healthcare costs associated with delayed diagnosis.
Children, especially, are at risk of being misdiagnosed, a mistake that has led to many unnecessary and preventable deaths.
For type 1 parents and for people with type 1 relatives, taking advantage of screening options through TrialNet is a great way to reduce this risk. For children living in Colorado, even those with no apparent risk of autoimmune dysfunction, it is still worth taking the time to have this screening done.
Beyond reducing the risk around diagnosis, these types of programs provide valuable data to researchers who are looking for a connection between genetics, environment, and lifestyle and the development of type 1 diabetes. Additionally, these programs provide important opportunities to study prevention and management methods that may reduce the number of those suffering from T1D in the future.