Directions Spring 2020

SMA Registry Demographics

Gender

Race

Ethnicity

259 patients reported gender

198 patients reported race

198 patients reported ethnicity

SMA Newborn Screening Registry For children diagnosed with SMA through newborn screening, Cure SMA requests that families answer a 20-question survey. Families can also consent to have their healthcare provider answer questions on their behalf. The SMA Newborn Screening Registry (NBSR) is a secure, online registry. 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 by visiting www.curesma.org/NBSR.

Educational Materials Cure SMA remains focused on providing the most up-to-date information about SMA to the entire SMA community. Our Care Series Booklets, including new booklets on newborn screening and clinical trials, are valuable publications that are continually updated and available in English and Spanish (where possible) at www.curesma.org/care-series-booklets/. If you would like paper copies of these materials, please contact info@curesma.org.

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DIRECTIONS | SPRING 2020

UPDATES