Purpose of the study: The purpose of the GALAXY Registry is to collect and store this information for individuals with X&Y variations. Since genetic differences like X&Y variations are rare, we need to get information from as many individuals as possible to draw the right conclusions. The GALAXY Steering Committee made up of doctors, researchers, and community advocates helps direct specific goals and how the data in the Registry can be used. Our overall goal is to be able to improve health outcomes in individuals with X&Y variations and the care they receive.
What’s Involved: If you join the study, you are allowing us to use information in your medical records for research. Additionally, you can complete questionnaires or join a recruitment list for future research but you can join the
registry without doing those as well.
To learn more about this study, contact 720-777-0705 or email firstname.lastname@example.org.
(COMIRB# 20-0482, ; PI Dr. Shanlee Davis; funded in part by AXYS)
You can also enroll yourself/your child in the registry online without coming into clinic, click here for the eligibility and consent information.
GALAXY Steering Committee:
Dr. Alan Rogol
Dr. Anna Dawczyk
Dr. Armin Raznahan
Dr. David Hong
Ginnie Cover, AXYS representative
Dr. Lilian Cohen
Dr. Maria Vogiatzi
Dr. Shanlee Davis
Susan Howell, CGC
Dr. Peter Schlegel
Dr. Nicole Tartaglia
You do not have to live in the US to be in GALAXY. However, the IRB (the board that governs our study) has not yet approved GALAXY to be GDPR compliant, so if you live in a country governed by GDPR, you are not eligible for GALAXY at this time. The study team is working on this and hopeful that it will change in the coming months.
Countries governed by GDPR are:
No you do not. These are completely optional and you can join the GALAXY registry without being on the future studies list or completing questionnaires.
To be eligible for GALAXY, the study team does need to review the genetic test that confirmed you have a diagnosis of an X&Y variation. To do that, you can upload a copy of the lab report when you consent. However, you can also opt to sign a Release of Records instead - this allows the study team to reach out to the clinic where you had the test done at and we can get a copy that way instead.