Generating Advancements Through Longitudinal Analysis in X and Y Variations (GALAXY) (NCT06373861) | Clinical Trial Compass
RecruitingNot Applicable
Generating Advancements Through Longitudinal Analysis in X and Y Variations (GALAXY)
United States5,000 participantsStarted 2022-04-28
Plain-language summary
GALAXY is a registry research study that plans to learn more about individuals with X\&Y variations (also called sex chromosome aneuploidies) through collecting information from medical records.This includes genetic tests, imaging, medications, and more for hundreds of patients seen at a number of clinics across the US. The purpose of the GALAXY Registry is to collect and store this information with the overall goal to improve health outcomes in individuals with X\&Y variations and the care they receive.
Who can participate
Age range
0 Days – 100 Years
Sex
ALL
See this in plain English?
AI-rewrites the medical criteria so a patient or caregiver can understand them. Always confirm with the trial site.
Inclusion criteria
. Genetically-confirmed diagnosis of a sex chromosome aneuploidy condition
. Any age
. Any gender
. Informed consent for individuals \>18 years of age, parent/guardian permission for individuals \<18 or proxy-consent from legally authorized representative if impaired decision making
Questions worth asking your doctor
Bring these to your next appointment. They're a starting point for a shared conversation — not a sign you qualify or a recommendation to enrol.
1This GALAXY study seems to focus on collecting long-term data about health conditions in people with sex chromosome aneuploidy — can you explain what kinds of health information they'd be tracking about me or my family member, and how that data would actually be used?
2Since this trial is listed as 'Phase NA,' it sounds like it's more of an observational or registry study rather than a treatment trial — does that mean there are no experimental interventions involved, and what would participation actually require day-to-day?
3Given that this study is still actively recruiting, how long would my or my family member's involvement last, and are there ongoing visits, surveys, or tests that could make participation difficult depending on our schedule or location?
4Would joining this longitudinal study affect eligibility for any treatment trials I might want to consider in the future, or could it actually help connect us to other research opportunities related to sex chromosome aneuploidy?
5Is there any immediate benefit to me or my family member from participating in this kind of data-collection study, or is the main value more about contributing to research that could help others with sex chromosome aneuploidy down the road?
Generated to help you prepare — always confirm anything about your own eligibility and care with the study team and your doctor.
Questions for the trial coordinator
The trial coordinator is the person who runs the study day to day. These cover the practical side — logistics, costs, and what taking part would actually mean for your life. The study team confirms whether you meet the criteria; these are questions to ask, not a sign you qualify.
1What does taking part actually involve week to week — how many visits, where, and how long does each one take?
2What costs are covered by the study, and what might I have to pay for myself, including travel, parking, or time off work?
3What happens during screening, and what happens if the study team confirms I don't meet the criteria after those tests?
4Who pays for the scans, blood work, and other tests the trial requires — the study, my insurance, or me?
5How will being in the trial affect my regular care, and will my own doctor stay informed and involved?
6Can I leave the trial at any point if I change my mind, and what would happen to my care if I do?
A starting point for the conversation — always confirm anything about your own eligibility, costs, and care with the study team and your doctor.
What they're measuring
1
Health Conditions
Timeframe: From study start until condition observed, up to 15 years