This governance document of the Inborn Errors of Metabolism Collaborative highlights organizational structure, roles, and responsibilities for building a network of patients and stakeholders to inform treatment decisions for phenylketonuria. It could be used by multiple stakeholder groups as an example of how to structure a governance document for any research collaborative.

Disclaimer: This tool was developed and provided by a third party. Opinions and information in this content are those of the third party and do not necessarily represent the views of PCORI. Accordingly, PCORI cannot make any guarantees with respect to the accuracy or reliability of the information and data in this content.