Data Collection Survey
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, our goal is to create 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.
TIPS to completing the Data Collection Survey:
- To prepare to enter your child’s data into the Survey, gather and organize ALL of your child’s height and weight data taken at clinic visits (i.e., pediatrician, genetics, endocrine, etc). Don’t forget to start at the beginning with birth length and birth weight, if available, and keep moving forward from there. Try to include every data point you have documentation of, and at a minimum, try to include at least one entry for each year. The more “data points” in your child’s history the better!
- You will also want to collect the heights of biological mom and biological dad if that information is available.
- Next, complete the patient demographic profile below and begin entering the data fields.
- The form includes direct links to use for data conversion for Height (inches to centimeters) and Weight (pounds to kilograms). Simply click on the link under the question in the Survey, a new Metric Conversion window will open, enter the inches (or pounds/ounces), and the converted amount will display, close the window and you will be taken back to where you left off on the form, enter the converted amount to the first decimal.
- If you have any questions about this, project, or need assistance completing the Survey, please email our team at firstname.lastname@example.org
- After all of the data you’ve collected has been entered, click “Submit Your Information” and the FCDGC research team will do the rest!