CDEs
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If other, please specify
23. Have you/ your family been in touch with any of the following resources?
If other, please specify
Case Number:
Time interview started:
Time interview ended:
Respondent is:
Thank you
The family will need to sign a form indicating their consent to audiotape the interview.
First I would like to ask you a few questions about how receiving this information through newborn screening may have been helpful or unhelpful for your family.
Would you please tell me about the process of receiving YOUR BABY's test results (both the newborn screen and the genetic testing)?
Who was the first person to contact you?
Did you talk over the phone or meet in person?
What did he/she tell you?
After being given the results, how did he/she direct you to proceed (in your daily lives, follow up appointments, etc.)?
Did you also receive a hard copy of the results through the mail?
Thinking back to the time YOUR BABY was diagnosed, how supportive were the medical and research staff who were involved in the diagnosis?
How were the medical and research staff most supportive during this time?
What could have been handled differently by the research staff when your baby was diagnosed?
Was there anything the medical professionals could have done differently to be more supportive when you received YOUR BABY's diagnosis?
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