The Long-Term Follow-Up Project will enrich existing data resources with long-term outcome data from diverse populations with inborn errors of metabolism (IBEM). These data are crucial to developing evidence-based care recommendations for all individuals with IBEM. MGN will support clinics in this endeavor by providing health equity training on recruiting diverse populations, translating consent forms into additional languages, and reimbursing for data entry.
What is the Long-term Follow-up Project’s Charge?
- Increase the racial and ethnic diversity of patients included in the IBEM long term follow up data, beginning with MGN states and including state from other regions
- Long-term follow-up data that better reflect the racial and ethnic diversity of the US population will be available to better direct care management