Numerous barriers, listed below, interfere with the provision of optimum care for individuals with UCDs. While infrastructure, patient-related and regulatory barriers present significant challenges, the implementation of the recommendations in this guideline have minimal impact on resource needs. The recommendations clarify management goals and support clinical decision-making without adding to the number of clinic visits, the number of tests, or the amount of contact time with the metabolic dietitian.

• Lack of trained metabolic geneticists, dietitians, genetic counselors, and other clinicians
• Lack of appropriate and accessible clinics, hospitals, and laboratories to treat and monitor patients

• Lack of understanding of the disorder, required treatment ,and monitoring
• Financial limitations for covering cost of clinic visits, laboratory testing, transportation, and medical foods
• Lack of access to medical foods and/or amino acid supplements (e.g., insurance coverage, shipping/back order delays, reliable sourcing)
• Language barriers
• Low literacy and/or numeracy

• Absence of universal mandates for coverage of medical foods, modified low-protein foods, monitoring supplies and metabolic dietitians’ services