DG Research Survey (Dec 2016) Phase 1
Complete the survey on every child you have in your family with DG or complete for yourself if you have DG.
Who is completing this survey
Parent of a DG child
Grandparent of a DG child
I am an adult with DG, completing it for myself.
Your current city, state, country
Age of applicant
Full Name of applicant (list one child at a time)
How long did it take from birth til you found out the diagnosis of DG? (in days)
After the newborn screening was flagged did you know at that time your child had DG? Or were you told it was a type of Galactosemia, and you needed additional bloodwork for confirmation?
Yes, we were told it was DG after newborn screening.
No, we had to do additional bloodwork after newborn screening.
No, we were unsure in regards to the test process and the results.
Did you complete a urinary galt and blood test to test for Galactosemia?
We only tested urine.
We only tested blood.
We tested both urine and blood.
After a positive verification of bloodwork was done, did you receive information on the condition or did you have to search for information on your own?
We received information on the condition from a doctor.
We received information in the form of a pamplet.
We had to search for information.
Currently, what is your main method for information on DG? (choose one)
Google Search Engine
Local Support Groups
Specific Websites On Galactosemia
Is there a specific DG social media page you use the most?
Is there a specific website you use the most? If so, list the site.
Was your child breastfeed? If so, how many days, weeks or months?
Any complications at birth?
Any changes in the mother's diet during pregnancy?
Yes, the mother restricted dairy during the pregnancy.
What type of formula did you use? Please be specific.
If your child is over 1 year of age, have you seen any delays? If not, type n/a
If delays are present, what type of delays have been seen or diagnosed?
If you had to give advice to a new mom with a DG child, what would it be?
Name the doctor that currently cares for your DG child or yourself? Also, list the type of doctor he/she is (metabolic specialist, pediatrician, geneticist, etc).
What type of improvements would you like seen in the DG medical community?
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