Replication Data for: Long-term monitoring of fatty acid oxidation defects - Results from a MetabERN survey

The long-term natural history of NBS LCFAOD patients is largely unknown and may differ from clinically diagnosed pre-NBS patients. This complicates long-term monitoring of LCFAOD and may cause high monitoring variability.

To gain insight in current clinical practice, we performed a web-based questionnaire among all metabolic members of the European Reference Network for Hereditary Metabolic Disorders (MetabERN). Here, the questionnaire and answers per respondent are reported.