Krabbe Newborn Screening - Family Perspective Survey
This anonymous survey is for parents and/or individuals affected by Krabbe Disease via a positive Newborn Screen, or symptomatic diagnosis with the disease. Your participation in this survey will be used in a patient perspective article for a medical journal to help providers understand affected families’ experience and perspective. If you have more than one child affected by Krabbe Disease please complete the survey for each child.
Relationship to the individual affected by Krabbe Disease: *
Required
If other, please specify:
Your answer
In what year was your child born? *
Your answer
If deceased, please include the year of their death:
Your answer
What country was your child born in? *
Your answer
If in the United States, what city and state were they born in? *
Your answer
How did you learn your child may be affected by Krabbe Disease? *
If your child has been diagnosed with Krabbe disease, what type does your child have? *
If your child has been found to test positive for Krabbe disease by the state newborn screening laboratory, what did the follow-up professionals tell you?
From your answer to the above question, how old was your child when you received this information from the follow-up professionals?
Your answer
Was your child eligible to receive a cord blood/bone marrow transplant to alter the effect of the disease? *
Did your child receive a cord blood/bone marrow transplant? *
Have you advocated for the addition of Krabbe Disease in your state’s NBS program (either in the state your child was born or the state in which you currently reside)? *
Do you believe newborn screening for Krabbe Disease should be implemented in every state *
In your own words, please explain your response to the previous question: *
Your answer
Additional Comments (If you would like to elaborate on any of your answers or feel there are relevant issues that were missed by the survey, please include them here):
Your answer
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