• How helpful were the educational materials you received throughout this process?
• Did you want more information about what newborn screening actually is and how it works?
• How can the process of informing families about Duchenne screening at the hospital be improved?
• Did you need more details about the confirmatory testing process for Duchenne?
• Do you have any recommendations for educational materials that could better serve families during this process?
• I would now like to ask you specifically about your thoughts on YOUR BABY having been screened for Duchenne as a newborn and your thoughts in general about newborn screening for Duchenne.
• If you were able to do it over again, would you still have decided to be a part of the newborn screening study or would you rather not have known about the diagnosis until after your baby started showing signs and symptoms?
• Why or why not?
• In light of your experience, do you think that screening for Duchenne should occur during the newborn period?
• Why or why not?
• If no, then when should screening for Duchenne occur?
• In what ways do you feel that knowing about your BABY's diagnosis before YOUR BABY started to show signs of Duchenne was helpful to you and your family?
• In what ways do you feel that knowing this information before YOUR BABY started to show signs of Duchenne was not helpful for you and your family?
• Has YOUR BABY's diagnosis affected your family dynamic? If so, how?
• Have you told your extended family about YOUR BABY'S diagnosis?
• If yes, how have they reacted?
• Do you find that your family has frequent discussions about YOUR BABY'S diagnosis?
• Do you find that you frequently watch YOUR BABY to determine whether he is reaching his milestones at the appropriate age?
• If you have other children, what do they know about Duchenne?
• Do you feel it is important to educate them about the disease as a result of YOUR BABY'S diagnosis?