Inborn Errors of Metabolism Collaborative

Newborn blood spot screening is a critical public health responsibility. Babies are screened with the hope that early diagnosis and treatment will be a good investment of public resources for the babies, their families, and for society. Although some health benefits are clear, for most newborn-screened disorders there is no long-term assessment of outcomes. To know that screening is effective in improving outcomes, we need to follow a screened baby's progress.

The Inborn Errors of Metabolism Collaborative (IBEMC) systematically collects information about the clinical progress of people that have conditions identified by newborn screening, focusing on inborn errors of metabolism. Data are used to learn about their survival, medical status, and long-term outcomes; and permit development of evidence-based practice in patient care.

Our Partners

NBSTRN logo Heartland logo NYMAC logo Region 4 Genetics Collaborative logo

What’s New

IBEM-IS has passed the 1,500 subject mark!
As of February 18, 2014, 1,516 subjects have data entered into the IBEM-IS. Of those 1,516, 963 were identified by NBS. Hyperphe/PKU has the largest number of enrollees (333) closely followed by MCAD (287), Biotinidase (175) and Galactosemia (139).

Important Dates