The Inborn Errors of Metabolism Stakeholder Network (IBEMCSN) began with a group of clinicians interested in studying the long term health outcomes of individuals born with rare genetic conditions known as inborn errors of metabolism (IBEM). The IBEMC allows metabolic specialists to collect longitudinal data about patients in an effort to learn more about these conditions and improve care for patients.
While this data base (IBEM-IS) provides a valuable tool for researchers, none of the over 7000 data elements were provided by patients. Sometimes the health outcomes valued by patients and their families are not the same as the ones pursued by clinicians. Patients are the only ones who really know what it’s like to live with a metabolic condition.
The goal of the stakeholder networks is to expand the scope of individuals involved in research, so that the outcomes being studied represent a broader perspective and result in meaningful results for those affected with the disorders.