Uncovering Rare Obesity®

Hi. If you’re watching this video, you may be an individual or caregiver interested in participating in the Uncovering Rare Obesity genetic testing program. You may have questions about what’s causing your obesity or why your child always seems hungry, why typical explanations simply don’t add up. It might be time to take a closer look. A look beyond diet, beyond exercise, beyond lifestyle, to the very cells that make you, you. Your genes.

Genes are the instruction manual for your body. They’re passed to you by your parents and determine how your body grows, develops, and functions. Changes in your genes, called genetic variants, may cause certain diseases, including rare genetic diseases of obesity. In this case, a key part of the brain responsible for controlling hunger doesn’t work the way it should. The brain can’t signal to the body that it’s eaten enough food, so hunger gets stuck in the “on” position. This broken signal may cause severe obesity that begins early in life, known as early-onset obesity, and insatiable hunger, called hyperphagia. If this sounds familiar, genetic testing may help in your search for answers and can provide useful information to you and your doctor. Testing can help your doctor determine if you may have one of these diseases, your possible treatment options, and potential eligibility for clinical trials. Testing may also provide the relief of understanding the cause of your obesity.

The Uncovering Rare Obesity program offers testing for rare genetic diseases of obesity and includes the most frequently tested genes associated with obesity, which means, even if you’ve been tested in the past, retesting may provide new information. This program is sponsored by Rhythm Pharmaceuticals. Rhythm pays for the test, but there may be other charges for the office visit, so be sure to check with your doctor.

You’re probably wondering, how does this all work? Let’s take a look. First, your doctor determines if you’re eligible for the Uncovering Rare Obesity program. To qualify for this program, you must meet the body mass index, or BMI, criteria, and be located in the United States or its territories. You may also qualify if you meet other select criteria, so speak with your doctor.

If you are eligible, your doctor will order the test and ask you to review and sign a consent form, giving your permission to collect your sample. The form confirms that you understand the test limitations, the potential impact of your results, and that the meaning of your results can change over time as scientific understanding deepens. It also highlights that you can receive genetic counseling. Both your doctor and the genetic counseling company will have access to your test results.

Once you’ve given your consent, you’ll provide a sample of your cells. Your doctor can use an oral swab or take a blood test. You can also use an oral swab yourself from home, if you prefer. Your sample is then sent to a clinical laboratory, PreventionGenetics, for testing. That’s it.

A genetic report with the results from your test will be sent directly to your doctor in a few weeks. It can be helpful to schedule an appointment ahead of time to review your results, because genetic test results can be confusing. Your doctor will help you understand what your results mean and work with you to determine the next steps.

As part of the Uncovering Rare Obesity program, you can also speak with a licensed genetic counselor to answer any questions you may have before the test and review your results after the test. These two genetic counseling sessions from a third-party genetic counseling company are included without charge, and you can schedule them at your convenience.

Your privacy is important. Your de-identified information, that’s information that contains no personal information attached to it, will be shared with Rhythm to help advance research efforts, and improve the program. On a separate form called the authorization form, you can also choose to share your identifiable health information with Rhythm. This enables Rhythm to contact you directly to discuss clinical trial eligibility and research opportunities. Finally, you can choose to sign-up to receive information about rare genetic diseases of obesity.

I hope I’ve helped you better understand the Uncovering Rare Obesity program and how genetic testing might help you take a step toward answers. Be sure to speak with your doctor to determine if genetic testing is right for you. For a copy of this video, plus additional information about the program, please visit our website.