The NewSTEPs New Disorders Workgroup supports newborn screening (NBS) programs with activities related to the implementation of screening for disorders recently added to the Recommended Uniform Screening Panel. The workgroup supports NBS programs through national webinars, technical assistance, educational materials and other resources. As NBS programs implement screening for Spinal Muscular Atrophy (SMA), the Workgroup has developed an SMA Resource Tool.

This resource tool was developed to aid state NBS programs in communication and education of key stakeholders during the implementation of new disorders.  The intended audience for this tool is state NBS programs who can distribute it amongst key stakeholders such as specialists, advocacy groups, or legislators and governmental agencies seeking information and NBS disorder implementation. 

To assist the Workgroup in assessing the utility of this resource tool, please complete the following survey by COB on Tuesday, August 31, 2021. Please note all responses will be kept confidential and any data shared for purposes of analysis will be de-identified and aggregated.

Thank you again for your participation and we look forward to your feedback.  

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* 1. How was the resource tool used, or what is the intended use?

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* 2. Who was your target audience?

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* 3. How frequently did your program use the tool?

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* 4. What particular components was useful and why?

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* 5. What additional information should have been included that was not included?

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* 6. What other disorders might benefit from a similar tool?

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* 7. Please share any additional comments or suggestions

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