State NBS Programs
They will share their experiences and help us learn what features and topics are most important to patients and their families for LTFU in NBS. We are using group discussions (focus groups) and online surveys to obtain feedback from participants.
Clinicians
They will share their experiences and help us learn what features and topics are most important to patients and their families for LTFU in NBS. We are using group discussions (focus groups) and online surveys to obtain feedback from participants.
Parents and Families
They will share their experiences and help us learn what features and topics are most important to patients and their families for LTFU in NBS. We are using group discussions (focus groups) and online surveys to obtain feedback from participants.
Please contact Dr. Amy Brower at abrower@acmg.net if you would like to learn more details about participation in this project.
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