GALAXY: Generating Advancements through Longitudinal Analysis in X and Y Syndromes

Primary Objective

The aim of the GALAXY Registry is to establish a multicenter database for individuals with X & Y chromosome variations. 1. The registry will be used to look at chronic illnesses, medications, clinical visits, surgeries, and more for individuals with X & Y chromosome variations. 2. The registry will be used to try to determine what may lead to the different outcomes like chronic illnesses, medications, etc. 3. The registry also aims to support improvement in future research by having standardized data and a pool of individuals willing to be contacted to participate.

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Description

Participants who join the GALAXY Registry are agreeing to have their medical records be used for research. There are no additional study visits, etc. – participants just continue with their usual clinical care. If participants are seen outside of Children’s Colorado, they can sign a Release of Records to allow us to see the information from those other clinics. In addition to the basic registry, individuals can join a recruitment list for future research or to receive annual questionnaires. You can join the basic registry without doing these options as well.

Details
Age

Child to Adult

Eligibility

Genetically-confirmed diagnosis of an X & Y chromosome variation (i.e., Klinefelter syndrome (XXY), Trisomy X (XXX), XXYY syndrome, etc.) Any age, sex, or gender

Type of Study

Observational

Scope

National

Locations

Childrens Hospital Colorado

Principal Investigator
Photograph of Shanlee Davis,  MD, MSCS

Shanlee Davis, MD, MSCS

Study ID

Protocol Number: 20-0482

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