Rare heritable syndromes may affect educational attainment. Here, we study education in neurofibromatosis 1 (NF1) that is associated with multifaceted medical, social and cognitive consequences. Educational attainment in the Finnish population‐based cohort of 1408 individuals with verified NF1 was compared with matched controls using Cox proportional hazards model with delayed entry and competing risk for death. Moreover, models accounting for the effects of cancer at age 15–30 years, parental NF1 and developmental disorders were constructed. Overall, the attainment of secondary education was reduced in individuals with NF1 compared to controls (hazard ratio 0.83, 95%CI 0.74–0.92). History of cancer and developmental disorders were major predictors of lack of secondary education. Individuals with NF1 obtained vocational secondary education more often than general upper secondary education. Consequently, NF1 decreased the attainment of Bachelor's and Master's degrees by 46%–49% and 64%–74%, respectively. Surprisingly, the non‐NF1 siblings of individuals with NF1 also had lower educational attainment than controls, irrespective of parental NF1. In conclusion, NF1 is associated with reduced educational attainment and tendency for affected individuals to obtain vocational instead of academic education. Individuals living with NF1, especially those with cancer, developmental disorders or familial NF1, need effective student counseling and learning assistance.

中文翻译：

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一种罕见的疾病和教育：1型神经纤维瘤病降低教育程度

罕见的遗传综合征可能会影响受教育程度。在这里，我们研究与多方面的医学、社会和认知后果相关的神经纤维瘤病 1 (NF1) 的教育。使用 Cox 比例风险模型，将 1408 名经验证 NF1 的芬兰人群队列的教育程度与匹配对照进行比较，该模型具有延迟进入和竞争死亡风险。此外，构建了解释 15-30 岁癌症、父母 NF1 和发育障碍影响的模型。总体而言，与对照组相比，NF1 患者的中学教育程度降低（风险比 0.83，95%CI 0.74-0.92）。癌症史和发育障碍是缺乏中等教育的主要预测因素。NF1 个体获得职业中等教育的频率高于普通高中教育。因此，NF1 使学士和硕士学位的获得率分别降低了 46%–49% 和 64%–74%。令人惊讶的是，无论父母是否患有 NF1，NF1 个体的非 NF1 兄弟姐妹的受教育程度也低于对照组。总之，NF1 与受教育程度降低和受影响个体获得职业而不是学术教育的趋势有关。患有 NF1 的人，尤其是患有癌症、发育障碍或家族性 NF1 的人，需要有效的学生咨询和学习帮助。分别。令人惊讶的是，无论父母是否患有 NF1，NF1 个体的非 NF1 兄弟姐妹的受教育程度也低于对照组。总之，NF1 与受教育程度降低和受影响个体获得职业而不是学术教育的趋势有关。患有 NF1 的人，尤其是患有癌症、发育障碍或家族性 NF1 的人，需要有效的学生咨询和学习帮助。分别。令人惊讶的是，无论父母是否患有 NF1，NF1 个体的非 NF1 兄弟姐妹的受教育程度也低于对照组。总之，NF1 与受教育程度降低和受影响个体获得职业而不是学术教育的趋势有关。患有 NF1 的人，尤其是患有癌症、发育障碍或家族性 NF1 的人，需要有效的学生咨询和学习帮助。