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 Mountain States Genetic Collaborative logo South Eastern Region Collaborative logo

What’s New

IBEM-IS has passed the 1,800 subject mark!
As of June 23, 2015 1,896 subjects representing 41 conditions have data entered into the IBEM-IS. Of those 1,896, 1,312 were identified by NBS. Hyperphe/PKU has the largest number of enrollees (451) closely followed by MCAD (337), Biotinidase (205) and Galactosemia (185). Four other conditions, VLCAD (89), SCAD (65), PROP (61) and MSUD (55), have data entered for more than 50 subjects.

Important Dates

  • Quarterly Reports for quarter ending 08.31.2015 are due no later than 09.30.2015
    • Quarterly Enrollment reports can be found in your center folder. Click on Q2 to enter your data.
      • IBEMC > IBEMC Centers > Your Center > Quarterly Reports > Y5 > Your Center Y5 Enrollment Report
    • Quarterly Narrative reports are still in the Survey section on the home page
  • IBEMC Telemeeting is August 21, 2015 from 2:00 – 3:00 EDT
  • NBSTRN July Newsletter
  • Journals that we can submit to – if you have any other suggestion please contact Sally/Melissa
  • American Society of Human Genetics Annual Meeting is October 6 – 10, 2015 in Baltimore, MD
  • National Society of Genetic Counselors Annual Education Conference is October 21 – 24, 2015 in Pittsburg, PA
  • AAP National Conference and Exhibition is October 24 – 27, 2015 in Washington, DC
  • ACMG Annual Clinical Genetics Meeting is March 8th-12th, 2016 in Tampa, FL