For Parents & Patients
What is the IBEMC?
The Inborn Errors of Metabolism Collaborative (IBEMC) is a group of clinician researchers
from metabolic centers across the US who have joined together to learn about long-term
outcomes of conditions identified by newborn screening. Our ultimate goal is to
improve outcomes for people identified with these conditions. Participants enter
data into the IBEM-IS to accomplish this goal.
What is IBEM-IS?
The Inborn Errors of Metabolism Information System (IBEM-IS) is a web-based system
designed to monitor health outcomes for people who have inborn errors of metabolism.
The IBEM-IS will allow the medical community to understand more about the natural
history and outcomes for rare inborn errors of metabolism, develop treatment protocols,
and support clinical research. No information is collected about you or your child
without your permission.
Why your information matters
The experiences and information you share will provide useful information to advance
the understanding of Inborn Errors of Metabolism. The IBEM-IS collects and manages
this data and assists physicians and researchers in every facet of patient care,
from investigating the cause to making the diagnosis to tracking the effectiveness
By participating, you will help to improve the lives of people with inborn errors of metabolism by:
- Assisting in better understanding of inborn errors of metabolism
- Improving care through the development of evidence-based treatment
- Offering a valuable resource for health care providers and researchers conducting clinical
trials and other studies
Who is eligible to participate?
People who have an inborn error of metabolism that can be detected by newborn screening
are eligible to participate. People can participate whether their condition was
found by newborn screening or not. However, not all metabolic clinicians or centers
currently participate. Talk to your metabolic provider about the IBEM-IS. If your
provider is not aware of the IBEM-IS, you can give him/her this email firstname.lastname@example.org
for more information or suggest s/he visit this website.
See our current Partners