Olivieri Giorgia, Greco Benedetta, Cairoli Sara, Catesini Giulio, Lepri Francesca Romana, Orazi Lorenzo, Mallardi Maria, Martinelli Diego, Ricci Daniela, Simeoli Raffaele, Dionisi-Vici Carlo
Division of Metabolic Diseases and Hepatology, Bambino Gesù Children's Hospital, IRCCS, Rome, Italy.
Laboratory of Medical Genetics, Translational Cytogenomics Research Unity, Bambino Gesù Children's Hospital, IRCCS, Rome, Italy.
J Inherit Metab Dis. 2025 Jan;48(1):e12787. doi: 10.1002/jimd.12787. Epub 2024 Aug 17.
Cobalamin C (Cbl-C) defect causes methylmalonic acidemia, homocystinuria, intellectual disability and visual impairment, despite treatment adherence. While international guidelines recommend parenteral hydroxocobalamin (OH-Cbl) as effective treatment, dose adjustments remain unclear. We assessed OH-Cbl therapy impact on biochemical, neurocognitive and visual outcomes in early-onset Cbl-C patients treated with different OH-Cbl doses over 3 years. Group A (n = 5), diagnosed via newborn screening (NBS), received high-dose OH-Cbl (median 0.55 mg/kg/day); Group B1 (n = 3), NBS-diagnosed, received low-dose OH-Cbl (median 0.09 mg/kg/day); Group B2 (n = 12), diagnosed on clinical bases, received low-dose OH-Cbl (median 0.06 mg/kg/day). Biochemical analyses revealed better values of homocysteine, methionine and methylmalonic acid in Group A compared to Group B1 (p < 0.01, p < 0.05 and p < 0.01, respectively) and B2 (p < 0.001, p < 0.01 and p < 0.001, respectively). Neurodevelopmental assessment showed better outcome in Group A compared to low-dose treated Groups B1 and B2, especially in Developmental Quotient, Hearing and Speech and Performance subscales without significant differences between Group B2 and Group B1. Maculopathy was detected in 100%, 66% and 83% of patients in the three groups, respectively. This study showed that "high-dose" OH-Cbl treatment in NBS-diagnosed children with severe early-onset Cbl-C defect led to a significant improvement in the metabolic profile and in neurocognitive outcome, compared to age-matched patients treated with a "low-dose" regimen. Effects on maculopathy seem unaffected by OH-Cbl dosage. Our findings, although observed in a limited number of patients, may contribute to improve the long-term outcome of Cbl-C patients.
钴胺素C(Cbl-C)缺陷会导致甲基丙二酸血症、高胱氨酸尿症、智力残疾和视力损害,即便坚持治疗也会如此。虽然国际指南推荐胃肠外给予羟钴胺(OH-Cbl)作为有效的治疗方法,但剂量调整仍不明确。我们评估了在3年时间里,不同OH-Cbl剂量治疗早发性Cbl-C患者时,OH-Cbl疗法对生化、神经认知和视觉结果的影响。A组(n = 5)通过新生儿筛查(NBS)确诊,接受高剂量OH-Cbl(中位数0.55毫克/千克/天);B1组(n = 3),NBS确诊,接受低剂量OH-Cbl(中位数0.09毫克/千克/天);B2组(n = 12),临床确诊,接受低剂量OH-Cbl(中位数0.06毫克/千克/天)。生化分析显示,与B1组(分别为p < 0.01、p < 0.05和p < 0.01)和B2组(分别为p < 0.001、p < 0.01和p < 0.001)相比,A组的高半胱氨酸、蛋氨酸和甲基丙二酸的值更好。神经发育评估显示,与低剂量治疗的B1组和B2组相比,A组的结果更好,尤其是在发育商数、听力与言语以及操作分量表方面,B2组和B1组之间无显著差异。三组患者中黄斑病变的检出率分别为100%、66%和83%。这项研究表明,与接受“低剂量”方案治疗的年龄匹配患者相比,NBS确诊的患有严重早发性Cbl-C缺陷的儿童采用“高剂量”OH-Cbl治疗可使代谢状况和神经认知结果得到显著改善。OH-Cbl剂量似乎对黄斑病变的影响不大。我们的研究结果虽然是在有限数量的患者中观察到的,但可能有助于改善Cbl-C患者的长期预后。