GROEICURVES CHARGE CHILD
This study collects information on patients diagnosed with CHARGE syndrome. The study retrospectively collects data on medication use, growth, cognition, and other factors using information derived from the medical records of 220 participants of all ages with a formal diagnosis of CHARGE syndrome from Germany, the Netherlands, and the United States of America. Follow-up of the selected participants is ongoing.
Study design
Cohort - clinical
Number of participants at first data collection
220 (participants)
Age at first data collection
Varied (participants)
Participant year of birth
Varied (participants)
Participant sex
All
Representative sample at baseline?
No
Sample features
Countries
Year of first data collection
2015
Primary Institutions
Saint Louis University (SLU)
University Medical Center Groningen (Universitair Medisch Centrum Groningen, UMCG)
Links
doi.org/10.34760/652665fe8608e
data-catalogue.molgeniscloud.org/catalogue/ssr-catalogue/all/Cohorts/GROEICURVES_CHARGE_CHILD
Profile paper DOI
Not available
Funders
CHARGE Syndrome Foundation
Ongoing?
Yes
Data types collected
- Secondary data
- None
- None
- Healthcare data
Engagement
Keywords
