9101: Generating Advancements in Longitudinal Analysis in X & Y Chromosome Variations (GALAXY) Registry

Study summary

The GALAXY research study’s purpose is to create a large and diverse database using information from medical records to learn more about X and Y chromosome variations and ways to improve the health outcomes of people with these conditions.

Diseases studied

Klinefelter syndrome (47,XXY), Trisomy X (47,XXX), Jacob’s syndrome (47,XYY) 48,XXYY and others

Eligibility

Individuals with genetically confirmed X and Y chromosome variation

Participation

Interested participants can enroll online or through a participating clinical site.

Procedures Involved

This includes consent for researchers to use information in the medical record for research purposes. The information is de-identified and stored in a secure database. There are also optional questionnaires and a one-time optional blood sample collection for biobanking.

Focus Areas

Track natural history, medical, educational, psychosocial issues and biomarkers

Current Enrollment

>600 individuals are enrolled, with the goal of achieving more than 1500 participants.

Contact information

Please contact the study coordinator at participating sites or go to our online self-enrollment link: http://redcap.link/GALAXY-consent to see if you’re eligible and complete the online consent form.

To learn more, see our frequently asked questions.