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 the IBEM-IS?

The Inborn Errors of Metabolism Information System (IBEM-IS) is a web-based registry system designed to monitor health outcomes for people who have inborn errors of metabolism. The IBEM-IS allows 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. IRB approval is required for all data collection.

Who manages the IBEM-IS?

The IBEM-IS is housed on a fully HIPAA compliance web-based server. Project oversight and management is provided by the Michigan Public Health Institute (MPHI) in collaboration with our Co-I at the University of Minnesota.

Who can access data for research?

Data are available to researchers. Proposals are accepted both from IBEMC partners and from researchers not involved in the IBEMC.

What kinds of research can be done with IBEM-IS data?

There are two types of research projects: 1) Data mining (use of registry data) and 2) establishing a study cohort from the IBEM-IS (expanded data).

How do I request IBEM-IS data?

The IBEMC has Standard Operating Procedures to facilitate the process of requesting data. The first step is to complete an IBEM-IS Data Research Proposal Form and submit it to info@ibem-is.org.

Who can use the IBEM-IS for collecting longitudinal data?

Interested clinicians are welcome to join the IBEMC and utilize the IBEM-IS for collecting longitudinal data on their patients. Participating clinicians must agree to abide by the IBEMC established Standard Operating Procedures.

Some clinician researchers have found that, while quite comprehensive, the IBEM-IS does not include all the data they are interested in researching. Processes have been established for adding study-specific data collection items to the IBEM-IS. This allows the researcher to access data on a broader number of patients then s/he might be able to do on their own.

Individual projects must be reviewed and approved by the IBEMC scientific review team. Researchers must agree to abide by IBEMC established Standard Operating Procedures.

How do I join the IBEMC?

For more information, contact info@ibem-is.org