Leegaard Anne, Gregersen Pernille A, Nielsen Trine Ø, Bjerre Jesper V, Handrup Mette M
Center for Rare Diseases, Pediatric and Adolescent Medicine, Aarhus University Hospital, Aarhus, Denmark.
Center for Rare Diseases, Pediatric and Adolescent Medicine, Aarhus University Hospital, Aarhus, Denmark; Department of Clinical Genetics, Aarhus University Hospital, Aarhus, Denmark; Institute for Biomedicine, Aarhus University, Aarhus, Denmark.
Eur J Med Genet. 2022 Nov;65(11):104630. doi: 10.1016/j.ejmg.2022.104630. Epub 2022 Sep 30.
Infants with Noonan Syndrome and hypertrophic cardiomyopathy have a poor prognosis and a high mortality especially when diagnosed before six months of age. As for the majority of the RASopathies, no medical treatment has been approved for Noonan Syndrome. Meanwhile, several approved agents targeting the same RAS/MAPK signaling pathway are used in cancer treatment. In this case report we describe a child with Noonan Syndrome caused by a pathogenic RIT1 variant, who developed severe early-onset hypertrophic cardiomyopathy and pulmonary valve stenosis. She received off-label treatment with the MEK-inhibitor trametinib which resulted in complete remission of the cardiac hypertrophy and a significant improvement of the pulmonary valve stenosis. Our case emphasizes the potential of existing cancer agents targeting the RAS/MAPK signaling pathway as successful treatment for RASopathy manifestations.
患有努南综合征和肥厚型心肌病的婴儿预后较差,死亡率较高,尤其是在6个月龄之前被诊断出来时。对于大多数RAS病来说,尚无针对努南综合征的获批药物治疗。与此同时,几种针对相同RAS/MAPK信号通路的获批药物正用于癌症治疗。在本病例报告中,我们描述了一名由致病性RIT1变异导致努南综合征的儿童,该儿童患有严重的早发性肥厚型心肌病和肺动脉瓣狭窄。她接受了MEK抑制剂曲美替尼的非标签治疗,结果心脏肥大完全缓解,肺动脉瓣狭窄显著改善。我们的病例强调了现有针对RAS/MAPK信号通路的癌症药物作为治疗RAS病表现的成功疗法的潜力。