History being made: ScreenPlus, the largest U.S. newborn screening study, includes Sanfilippo

May 13, 2021

History is being made! Starting this week, newborns in the largest ever U.S. newborn screening study, ScreenPlus, are being screened for Sanfilippo syndrome Type B! Addition of Sanfilippo Type A will follow in the coming months!

Why invest in Newborn Screening Research?

Early diagnosis in the newborn period provides families the information needed to immediately seek clinical trial opportunities and therapies, which in most cases is quite literally the only lifeline these children have. Identifying children at birth also helps spur on the development of more and increasingly better treatments, faster. The impact of expanded newborn screening for those unknowingly born with Sanfilippo syndrome and for all children cannot be overstated.

What is ScreenPlus?

ScreenPlus is the largest multi-disorder prospective consented pilot newborn screening program in the United States. Newborns born in high birth-rate, ethnically-diverse New York hospitals whose parents consent to participate in ScreenPlus will have the most state-of-the-art screening in the country, including screening for Sanfilippo Type B.

“The ScreenPlus program will provide critical information about whether these screening methods for Sanfilippo syndrome, and 14 other devastating childhood diseases, are effective at identifying babies at a time of their lives when therapies can provide maximum benefit. Positive results from this pilot screening study will pave the way for the addition of Sanfilippo syndrome to newborn-screening panels in every state across the nation,” said Foundation Chief Science Officer and ScreenPlus Community Advisory Board Member Cara O’Neill, MD, FAAP.

How is Cure Sanfilippo Foundation helping?

Cure Sanfilippo Foundation’s grant support of ScreenPlus, which aims to test more than 175,000 New York babies, will enable the addition of Sanfilippo syndrome Type A, the most common and aggressive form of the disease, to the list of disorders screened in the pilot study.

Additionally, the Foundation’s grant support hopes to enable ScreenPlus to increase recruitment of newborns beyond the planned 175,000, by expanding to more hospitals so even more children benefit from early screening of these life-limiting disorders.

“We are grateful for the support of partner-families, donors, and collaborative industry-support from Abeona Therapeutics, all of which have enabled the Foundation to proudly join in this history-making program,” said Foundation President Glenn O’Neill.

Learn more about ScreenPlus at www.ScreenPlusNY.org.

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