North American Fetal Therapy Network Fetal Myelomeningocele Repair Registry

After the publication of the MOMS trial, fetal surgery for myelomeningocele (MMC) – the most severe form of spina bifida – has now become a standard of care option. With the support of the North American Fetal Therapy Network (NAFTNet), Julie Moldenhauer, MD, is leading a study with the goal of creating a registry (i.e., a databank) that includes information about maternal-fetal surgery for myelomeningocele across all centers participating through NAFTNet.

The Center for Fetal Diagnosis and Treatment (CFDT) participates in this multicenter study to continue to monitor health outcomes of the children and mothers who undergo fetal surgery for MMC at CHOP.  This information is important because it will provide both clinical teams and families with more information about long-term outcomes, and allow our clinical team to best answer families’ questions about our experience with fetal MMC repair.