In 2018, Spinal Muscular Atrophy (SMA) was added to the federal Recommended Uniform Screening Panel (RUSP), a panel of diseases that newborns in the United States are recommended to be screened for. However, the decision on whether to implement newborn screening for a specific condition is up to each state. Since SMA’s inclusion on the RUSP, many states have implemented newborn screening. As evidence has shown, early diagnosis and treatment leads to better outcomes.
Cure SMA has developed a data registry for children with SMA who were identified through newborn screening. The Newborn Screening Registry (NBSR) is a secure, online registry established to collect and analyze information on patients diagnosed with spinal muscular atrophy through newborn screening. This information will help families, health care providers, and researchers learn more about SMA, better manage symptoms over time, and develop new treatments. We intend to use this information, along with the information in our clinical data registry, to better understand the impact of SMA NBS on SMA and develop evidence-based standards of care for SMA.
If you are a parent or caregiver of a child with SMA who was identified through newborn screening, we invite you to participate in our registry. Follow this link to learn more.