PPMD is excited to announce another significant milestone in Duchenne newborn screening: Ohio will be the first state to screen all babies for Duchenne! More than 129,000 babies are born in Ohio every year, and the state expects to identify 35 babies with Duchenne annually.

Ohio was the first state, followed by New York and Minnesota, to approve newborn screening for Duchenne when Ohio Governor Mike DeWine signed HB 33 into law in July 2023. The state now becomes the first in the nation to implement newborn screening for Duchenne.

Ohio has long been a hub of clinical care and research advances in Duchenne, with three Certified Duchenne Care Centers: Nationwide Children’s Hospital in Columbus, Akron Children’s Hospital in Akron, and Cincinnati Children’s Hospital Medical Center in Cincinnati. These Duchenne specialty clinics will help ensure that every baby diagnosed with Duchenne in Ohio will receive optimal care.

Families with newborns identified through the program will be referred to coordinating sites in order to receive care and resources. Families can benefit from monitoring their child’s development, receiving appropriate physical and speech therapy, genetic counseling, and carrier screening for family members. Equitable, early diagnosis also means that families will not face the burden of delayed diagnosis and may be able to access approved therapies as early as possible, including therapies that must be administered by a certain age.  

PPMD will continue to engage with the Ohio Department of Health to understand referral pathways, clinician and patient support, and keep the community abreast of important updates.

PPMD For You

PPMD is here to support all families with Duchenne, including families with newborns identified through newborn screening. This includes developing education materials for families with a newly diagnosed newborn, connecting families with experienced peer mentors, and helping to educate pediatricians and primary care physicians who are involved in the newborn screening process. Our PPMD For You program provides personalized support from care experts in a variety of areas, including newly diagnosed. Schedule a 1:1 appointment with our team here.

Get Involved

For more than a decade, PPMD has been at the forefront of advocating for Duchenne newborn screening, reflecting our commitment to early diagnosis and better care. Today’s milestone represents a significant advancement in the broader effort to expand newborn screening for Duchenne to other states.

Our vision is to ensure that all babies in all states have the same opportunities for diagnosis and care. PPMD continues to work towards the inclusion of Duchenne on the federal Recommended Uniform Screening Panel (RUSP), promoting newborn screening for Duchenne in other states, and expanding additional Certified Duchenne Care Centers across the country. 

If you are interested in supporting state or federal efforts by sharing your story or contacting your state elected officials, please reach out to Lauren Stanford at lauren@parentprojectmd.org.

To learn more about PPMD’s work in newborn screening, click here.