GALAXY: Generating Advancements in Longitudinal Analysis in X and Y Variations

Clinical Trials

Offered by: Nemours Children's
Location: Delaware Valley

Trial Name

GALAXY: Generating Advancements in Longitudinal Analysis in X and Y Variations

What is the trial about?

Since genetic differences like X&Y chromosome variations are rare, we need information from as many individuals as possible to draw the right conclusions. This study plans to learn more about individuals with X&Y chromosome differences through collecting information from data and samples. This includes learning more about what causes some problems in individuals with X&Y variations, and how to prevent and treat them.

This research is observational which means that there is no change to any treatment that your child may be receiving. We are interested in information from your child’s past medical history as well as future updates.

This study is not designed to treat any illness or to improve your child’s health. The benefit of this study will be to the X&Y variations community.

Who can participate?

Individuals with confirmed X and Y chromosome variations in the United States are eligible to participate in the study. We anticipate up to 5,000 people around the country will be in the study.

What is involved?

About 1-2 teaspoons of blood will be drawn by putting a needle into one of your child’s veins and letting the blood flow into a glass tube. This blood draw would only occur with a blood draw you may already be receiving. We will make every attempt to collect the research sample at a time when your child is already having a clinical blood draw. Your child may feel some pain when the needle goes into their vein. If possible. We will also offer to prescribe an anesthetic cream which if placed prior to the blood draw will minimize any discomfort.