Santoro Lucia, Zampini Lucia, Padella Lucia, Monachesi Chiara, Zampieri Stefania, Dardis Andrea, Cordiali Rosanna, Galeazzi Tiziana, Catassi Carlo
Department of Clinical Sciences, Division of Pediatrics Polytechnic University of Marche, Ospedali Riuniti, Presidio Salesi Ancona Italy.
Regional Coordinator Centre for Rare Diseases Academic Hospital "Santa Maria della Misericordia" Udine Italy.
JIMD Rep. 2020 Jul 10;55(1):15-21. doi: 10.1002/jmd2.12144. eCollection 2020 Sep.
Alpha mannosidosis is an ultrarare pathology with variable phenotypic manifestations, characterized by the deficiency of lysosomal alpha mannosidase which causes accumulation of neutral oligosaccharides. Until recently, the hematopoietic stem cell transplantation was the only clinical feasible therapeutic option. Only in 2018, the European Medicines Agency's committee approved the recombinant enzyme velmanase alfa for long-term treatment of non-neurological manifestations in mild and moderate forms of alpha-mannosidosis. In this study, the very early biochemical effects of enzyme replacement therapy in in a 7-month-old patient with alpha-mannosidosis were described. Velmanase alpha was administered as supporting therapy awaiting for hematopoietic stem cell transplantation, the treatment chosen for the patient because of the early onset form. The results showed that the enzyme replacement therapy was able to reduce the content of three different mannosyl-oligosaccharides monitored by tandem mass spectrometry after 2 months of treatment. In particular, the mean relative changes from baseline values were -67% in urine and -53% in serum at the latest observation. The study also showed that the enzymatic activity detected in serum 1 week after the first infusion was four times higher than the normal values and constant in the following points of observation. These findings led us to assume that velmanase alfa might be biologically active in this young patient.
α-甘露糖苷贮积症是一种极为罕见的疾病,具有多种表型表现,其特征是溶酶体α-甘露糖苷酶缺乏,导致中性寡糖蓄积。直到最近,造血干细胞移植仍是唯一临床可行的治疗选择。仅在2018年,欧洲药品管理局委员会批准了重组酶velmanase alfa用于长期治疗轻度和中度α-甘露糖苷贮积症的非神经学表现。在本研究中,描述了酶替代疗法对一名7个月大的α-甘露糖苷贮积症患者的早期生化效应。由于患者发病早,选择造血干细胞移植作为治疗方案,而velmanase alfa作为支持疗法在等待造血干细胞移植期间使用。结果显示,治疗2个月后,酶替代疗法能够降低串联质谱监测的三种不同甘露糖基寡糖的含量。特别是,在最新观察时,尿液中相对于基线值的平均变化为-67%,血清中为-53%。该研究还表明,首次输注后1周血清中检测到的酶活性比正常值高4倍,且在随后的观察点保持恒定。这些发现使我们推测velmanase alfa在这名年轻患者中可能具有生物学活性。