Frequently Asked Questions (FAQs)

  1. How can I participate?
    Please go to our Contact us page and either fill out the inquiry form, or contact a study team member via email or telephone.

  2. Who is eligible for the study?
    Children between the ages of 10-20 who meet study criteria. For more information and to determine your child's eligibility, please visit our study page or contact a study member.

  3. Where does the study take place?
    This study is multi-site, and therefore recruits from both Children's Hospital of Philadelphia (CHOP) and Children's National Medical Center (CNMC). Study visits take place at either the CHOP main hospital in Philadelphia, PA, or the CNMC main hospital in Washington, DC, depending on where a patient is recruited from, and what is most convenient for the family. Due to all of the procedures involved, all study visits must take place at a main hospital location and not a satellite center. All of the study technicians are located at the main hospitals, and it ensures that all procedures will be completed on the same day. Blood draw visits for the Thyroid Treatment study, however, may be completed at satellite locations.

  4. My child does not have any heart problems. Can he/she still participate in the study?
    Absolutely! The study is looking at the risks of these conditions in children and adolescents with Down syndrome; this does not mean that we need individuals with current heart problems. Most study participants thus far have not had any heart problems at all. That said, if your child does have heart issues, this does not necessarily mean they would not be eligible for the study either. In either case, the study team would need to complete a screening to determine eligibility further.

  5. Will I be compensated for my time?
    Yes, you and your child will be compensated. For more details, please go to our "Contact us" page and either fill out the inquiry form, or contact a study team member via email or telephone.

  6. I am interested in having my child participate as a control subject, how can I go about this?
    If your child is between the ages of 10-20 and meets the study criteria, they are likely eligible to participate as a control subject in our study. In order for your child to particpate, we would first need to determine whether they "match" a currently enrolled subject with Down syndrome. We match our control subjects to our subjects with DS based on age, sex, race, ethnicity, and body mass index. If you are interested in having your child particpate, please contact us or visit our Controls page for more information.

  7. What is the purpose of this study?
    The aim of this study is to understand the risks of developing heart disease and type 2 diabetes in children and adolescents with Down syndrome. Through this study, we hope to obtain more information regarding the risks of metabolic health issues in children and adolescents with DS in order to equip medical providers with the tools to better assess risk and initiate prevention measures.

  8. How many visits are involved in this study?
    The study requires only one visit to either CHOP main or CNMC main. It requires a full day, followed by a few at-home procedures. Please see our study page for more information.

  9. What does a study visit entail?
    A typical study visit would run from about 8:00am until 3:30pm and involves a number of procedures throughout the day. Typically, your child would have a fasting blood draw, an echocardiogram, height and weight measurements, a DXA scan and a research procedure called a Pulse wave velocity. For more details and information please contact a study team member at our email address , or visit our study page.

  10. What is the physical activity armband, and does my child have to wear it?
    The physical activity armband is a device used to measure the participant's level of physical activity — light, medium, or vigorous activity; hours of sleep; steps taken, etc. — and will ideally be worn for seven days following the study visit. Wearing the physical activity armband is a requirement of the study, but if you have any reservations or concerns regarding the device, a study team member would be happy to discuss it with you further. You can take a look through our photo booklet or study pamphlet to obtain a better idea of what the armband looks like, or contact us with any questions.

  11. Will the results of the study be shared with me?
    Yes. All clinically relevant results will be shared with you, and if your give us permission, your child's physician. Following the visit, we will send a letter to both you and your child's primary care doctor, which details results of the fasting blood draw, including the lipid panel. The echocardiogram performed as part of this study is a limited one, but if any irregularities are found, we will discuss them with you and your child's doctor, and leave the follow-up to your discretion.