Service d'Hémato-Oncologie Pédiatrique Registre des neutropénies congénitales, AP-HP Hopital Trousseau, 26 avenue du Dr Netter, Paris, France.
Orphanet J Rare Dis. 2011 May 19;6:26. doi: 10.1186/1750-1172-6-26.
The term congenital neutropenia encompasses a family of neutropenic disorders, both permanent and intermittent, severe (<0.5 G/l) or mild (between 0.5-1.5 G/l), which may also affect other organ systems such as the pancreas, central nervous system, heart, muscle and skin. Neutropenia can lead to life-threatening pyogenic infections, acute gingivostomatitis and chronic parodontal disease, and each successive infection may leave permanent sequelae. The risk of infection is roughly inversely proportional to the circulating polymorphonuclear neutrophil count and is particularly high at counts below 0.2 G/l.When neutropenia is detected, an attempt should be made to establish the etiology, distinguishing between acquired forms (the most frequent, including post viral neutropenia and auto immune neutropenia) and congenital forms that may either be isolated or part of a complex genetic disease.Except for ethnic neutropenia, which is a frequent but mild congenital form, probably with polygenic inheritance, all other forms of congenital neutropenia are extremely rare and have monogenic inheritance, which may be X-linked or autosomal, recessive or dominant.About half the forms of congenital neutropenia with no extra-hematopoietic manifestations and normal adaptive immunity are due to neutrophil elastase (ELANE) mutations. Some patients have severe permanent neutropenia and frequent infections early in life, while others have mild intermittent neutropenia.Congenital neutropenia may also be associated with a wide range of organ dysfunctions, as for example in Shwachman-Diamond syndrome (associated with pancreatic insufficiency) and glycogen storage disease type Ib (associated with a glycogen storage syndrome). So far, the molecular bases of 12 neutropenic disorders have been identified.Treatment of severe chronic neutropenia should focus on prevention of infections. It includes antimicrobial prophylaxis, generally with trimethoprim-sulfamethoxazole, and also granulocyte-colony-stimulating factor (G-CSF). G-CSF has considerably improved these patients' outlook. It is usually well tolerated, but potential adverse effects include thrombocytopenia, glomerulonephritis, vasculitis and osteoporosis. Long-term treatment with G-CSF, especially at high doses, augments the spontaneous risk of leukemia in patients with congenital neutropenia.
先天性中性粒细胞减少症包括一组中性粒细胞减少症疾病,既有永久性的也有间歇性的,严重(<0.5 G/l)或轻度(0.5-1.5 G/l 之间),也可能影响其他器官系统,如胰腺、中枢神经系统、心脏、肌肉和皮肤。中性粒细胞减少可导致危及生命的化脓性感染、急性龈口炎和慢性牙周病,每次继发感染都可能留下永久性后遗症。感染的风险大致与循环中多形核中性粒细胞计数成反比,当计数低于 0.2 G/l 时风险尤其高。当发现中性粒细胞减少时,应尝试确定病因,区分获得性形式(最常见的包括病毒性中性粒细胞减少和自身免疫性中性粒细胞减少)和先天性形式,这些形式可能是孤立的或作为复杂遗传疾病的一部分。除了种族中性粒细胞减少症,这是一种常见但轻度的先天性形式,可能具有多基因遗传,所有其他形式的先天性中性粒细胞减少症都极为罕见,具有单基因遗传,可能是 X 连锁或常染色体隐性或显性遗传。大约一半无造血系统表现和正常适应性免疫的先天性中性粒细胞减少症是由于中性粒细胞弹性蛋白酶(ELANE)突变引起的。一些患者在生命早期就有严重的永久性中性粒细胞减少症和频繁感染,而另一些患者则有轻度间歇性中性粒细胞减少症。先天性中性粒细胞减少症也可能与广泛的器官功能障碍相关,例如 Shwachman-Diamond 综合征(与胰腺功能不全相关)和糖原贮积病 Ib 型(与糖原贮积综合征相关)。到目前为止,已经确定了 12 种中性粒细胞减少症的分子基础。严重慢性中性粒细胞减少症的治疗应侧重于预防感染。它包括抗菌预防,通常使用甲氧苄啶-磺胺甲噁唑,还包括粒细胞集落刺激因子(G-CSF)。G-CSF 极大地改善了这些患者的预后。它通常耐受性良好,但潜在的不良反应包括血小板减少症、肾小球肾炎、血管炎和骨质疏松症。长期使用 G-CSF,特别是高剂量,会增加先天性中性粒细胞减少症患者白血病的自发风险。