CDG/NGLY1 Growth Chart Project

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 info@cdgcare.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!

"*" indicates required fields

Please select your Relationship to the patient*

Do you have more than one family member diagnosed with CDG or NGLY1?*

Please complete and submit this form once for each family member that has been diagnosed with CDG/NGLY1

Your Name*

First Last

Your Email*

Email address is only collected so that we may contact you if we have questions about any data provided.

Please select the Country where the patient resides from the following list:*

Is the patient currently enrolled in the Frontiers in CDG Consortium (FCDGC) Natural History Study at Mayo Clinic, CHOP, Seattle Children’s or any affiliated FCDGC clinic?*

Please provide the Name of the patient:*

First Last

Please select the patient’s confirmed CDG Type or NGLY1 from the list provided:*

If additional testing has not been performed to confirm this, please select “Genetic type not provided”.

Please provide the Date of Birth of the patient:*

Please provide the approximate AGE of the patient at the time of diagnosis:*

Please provide the Gender of the patient:*

Please provide the Birth Weight (in kilograms to one decimal point) of the patient:*

Pounds to Kilograms | lbs to kg conversion (metric-conversions.org)

Please provide the Birth Length (in centimeters to one decimal point) of the patient:*

Inches to Centimeters – in to cm conversion (metric-conversions.org)

Was the patient born prematurely?*

A premature birth is a birth that takes place more than three weeks before the baby’s estimated due date (or before the 37th week of pregnancy).

Please enter the last known Height (in centimeters to one decimal point) of the patient’s biological MOTHER. If this data is not available, please enter “0”:*

Inches to Centimeters – in to cm conversion (metric-conversions.org)

Please enter the last known Height (in centimeters to one decimal point) of the patient’s biological FATHER. If this data is not available, please enter “0”:*

Inches to Centimeters – in to cm conversion (metric-conversions.org)

Please enter the patient’s Height (in centimeters to one decimal point) and Weight (in kilograms to one decimal point) for every Clinic Visit that you have record of. EVERY clinic data that you are able to collect and report is important to this retrospective data collection survey:

Click the “Add Entry” button and complete the data fields in the corresponding modal window for each item you would like to add to this submission.

Clinic Visit Date:	Height (in centimeters):	Weight (in kilograms):	Actions

There are no Entries.

Phone

This field is for validation purposes and should be left unchanged.