- CDG Type(s): All CDG types or NGLY1-CDDG with a confirmed diagnosis
- Study Type: Data Collection Survey
- Location: Online
- Status: Active
As a parent or caregiver of a child diagnosed with CDG or NGLY1-deficiency, you may have experienced that your child is growing differently than an unaffected developing child. You or your child’s providers may have noted the difficulty of interpreting your child’s growth when using the existing reference growth charts which are different from the specific growth patterns of children with CDG or NGLY1.
In collaboration with the Frontiers in CDG Consortium (FCDGC) Research Team, CDG Care is developing a CDG/NGLY1 specific growth chart that can be used as a reference for families and clinicians to monitor growth. These charts will also be used to track response to therapy, as normative data for growing children with CDG or NGLY1 can help guide treatment decisions and evaluate the effectiveness of new treatments in clinical trials.
Data will be collected for the study through June 2022.
Learn more about this important opportunity by visiting the study page or contact CDG CARE at firstname.lastname@example.org with any questions.View Study Website