Sabourdy Frédérique, Mourey Lionel, Le Trionnaire Emmanuelle, Bednarek Nathalie, Caillaud Catherine, Chaix Yves, Delrue Marie-Ange, Dusser Anne, Froissart Roseline, Garnotel Roselyne, Guffon Nathalie, Megarbane André, Ogier de Baulny Hélène, Pédespan Jean-Michel, Pichard Samia, Valayannopoulos Vassili, Verloes Alain, Levade Thierry
Laboratoire de Biochimie Métabolique, IFB, CHU Purpan, Toulouse, France.
INSERM UMR 1037, CRCT, Université Paul Sabatier Toulouse-III, Toulouse, France.
Orphanet J Rare Dis. 2015 Mar 15;10:31. doi: 10.1186/s13023-015-0244-7.
Multiple sulfatase deficiency is a rare inherited metabolic disorder caused by mutations in the SUMF1 gene. The disease remains poorly known, often leading to a late diagnosis. This study aimed to provide improved knowledge of the disease, through complete clinical, biochemical, and molecular descriptions of a cohort of unrelated patients. The main objective was to identify prognostic markers, both phenotypic and genotypic, to accelerate the diagnosis and improve patient care.
The phenotypes of ten unrelated patients were fully documented at the clinical and biochemical levels. The long-term follow-up of each patient allowed correlations of the phenotypes to the disease outcomes. Each patient's molecular defects were also identified. Site-directed mutagenesis was used to individually express the mutants and assess their stability. Characterisation of the protein mutants was completed by in silico analyses based on sequence comparisons and structural models.
The most severe cases were characterised by the presence of non-neurological symptoms as well as the occurrence of psychomotor regression before 2 years of age. Nine novel SUMF1 mutations were identified. Clinically severe forms were often associated with SUMF1 mutations that strongly affected the protein stability and/or catalytic function as predicted from in silico and western blot analyses.
This detailed clinical description and follow-up of a cohort of patients, together with the molecular characterisation of their underlying defects, contribute to improved knowledge of multiple sulfatase deficiency. Predictors of a bad prognosis were the presence of several non-neurological symptoms and the onset of psychomotor regression before 2 years of age. No strict correlation existed between in vitro residual sulfatase activity and disease severity. Genotype-phenotype correlations related to previously reported mutants were strengthened. These and previous observations allow not only improved prediction of the disease outcome but also provision of appropriate care for patients, in the expectation of specific treatment development.
多种硫酸酯酶缺乏症是一种由SUMF1基因突变引起的罕见遗传性代谢紊乱疾病。该疾病仍鲜为人知,常导致诊断延迟。本研究旨在通过对一组无亲缘关系患者进行全面的临床、生化和分子描述,增进对该疾病的了解。主要目标是识别表型和基因型的预后标志物,以加速诊断并改善患者护理。
在临床和生化水平上全面记录了10名无亲缘关系患者的表型。对每位患者的长期随访使表型与疾病结局建立了关联。还确定了每位患者的分子缺陷。使用定点诱变分别表达突变体并评估其稳定性。基于序列比较和结构模型的计算机分析完成了蛋白质突变体的表征。
最严重的病例表现为存在非神经症状以及在2岁前出现精神运动发育倒退。鉴定出9种新的SUMF1突变。临床严重形式通常与SUMF1突变相关,根据计算机分析和蛋白质印迹分析预测,这些突变强烈影响蛋白质稳定性和/或催化功能。
对一组患者的详细临床描述和随访,以及对其潜在缺陷的分子表征,有助于增进对多种硫酸酯酶缺乏症的了解。预后不良的预测指标是存在多种非神经症状以及在2岁前出现精神运动发育倒退。体外残留硫酸酯酶活性与疾病严重程度之间不存在严格的相关性。与先前报道的突变体相关的基因型-表型相关性得到了加强。这些以及先前的观察结果不仅有助于更好地预测疾病结局,还能为患者提供适当的护理,以期开发出特定的治疗方法。