Office of the Clinical Director, National Human Genome Research Institute, National Institutes of Health , Bethesda, MD, USA.
Medical Genetics Branch, National Human Genome Research Institute, National Institutes of Health , Bethesda, MD, USA.
Platelets. 2020 May 18;31(4):544-547. doi: 10.1080/09537104.2019.1663810. Epub 2019 Sep 5.
Hermansky-Pudlak syndrome (HPS) is a rare autosomal recessive disorder characterized by defective biogenesis of lysosome-related organelles. Clinical manifestations include a bleeding diathesis due to a platelet delta storage pool deficiency, oculocutaneous albinism, inflammatory bowel disease, neutropenia, and pulmonary fibrosis. Ten genes associated with HPS are identified to date, and each gene encodes a protein subunit of either Biogenesis of Lysosome-related Organelles Complex (BLOC)-1, BLOC-2, BLOC-3, or the Adaptor Protein-3 complex. Several genetic variants and phenotypic heterogeneities are reported in individuals with HPS, who generally exhibit easy bruisability and increased bleeding. Desmopressin, pro-coagulants, or platelet transfusion may be used as prophylaxis or treatment for excessive bleeding in patients with HPS. However, response to desmopressin can be variable. Platelets are effective in preventing or treating bleeding in individuals with HPS, but platelets should be transfused judiciously to limit alloimmunization in patients with HPS who are at risk of developing pulmonary fibrosis and may be potential candidates for lung transplantation. The discovery of new genes associated with HPS in people with excessive bleeding and hypopigmentation of unknown etiology may be facilitated by the use of next-generation sequencing or panel-based genetic testing.
Hermansky-Pudlak 综合征(HPS)是一种罕见的常染色体隐性遗传病,其特征是溶酶体相关细胞器的生物发生缺陷。临床表现包括由于血小板δ储存池缺乏导致的出血倾向、眼皮肤白化病、炎症性肠病、中性粒细胞减少症和肺纤维化。迄今为止,已经确定了与 HPS 相关的 10 个基因,每个基因编码 Biogenesis of Lysosome-related Organelles Complex(BLOC)-1、BLOC-2、BLOC-3 或 Adaptor Protein-3 复合物的一种蛋白亚基。在 HPS 患者中报告了几种遗传变异和表型异质性,他们通常表现出易瘀伤和出血增加。去氨加压素、促凝血剂或血小板输注可用于预防或治疗 HPS 患者的过度出血。然而,去氨加压素的反应可能会有所不同。血小板可有效预防或治疗 HPS 患者的出血,但应谨慎输注血小板,以限制有发生肺纤维化风险且可能是肺移植潜在候选者的 HPS 患者的同种免疫。通过使用下一代测序或基于面板的基因检测,可能有助于发现与不明病因的过度出血和色素减退的 HPS 患者相关的新基因。