Acromegaly is a rare disease, associated with multiple organs and systems damage. Thanks to implementation of registries, systematic data gathering, knowledge sharing and standardizing medical practices for optimal care greatly improved. Data concerning 19 national acromegaly registries are available, involving more than 16,000 patients. The weighted mean age of diagnosis is 45.2 years and seems stable over time. A macroadenoma is found in 75% of the cases. The proportion of patients operated (>80%) did not change along time. By contrast, use of radiotherapy has decreased while use of medical therapy increased. If judged on IGF-I levels, acromegaly is controlled in 61.3% of the patients. The disease control rate has improved over time. This is likely due to the development of medical treatment strategies. The collection of data about comorbidities in national registries is much less comprehensive than those about epidemiology, disease control or treatment strategies. The most reported comorbidities are arterial hypertension and diabetes. Data concerning mortality trends are controversial. It seems that cancer has become a leading cause of death in acromegaly patients in the last decade, period in which life expectancy improved, while cardiovascular mortality decreased. In conclusion, acromegaly registries offer a global view of the disease with no "a priori" assumptions. This is of outmost importance, because of the large amount of data and the huge number of associated comorbidities. This will help to establish guidelines for management of this rare disease.

中文翻译：

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国家肢端肥大症登记处。

肢端肥大症是一种罕见的疾病，与多个器官和系统损害相关。由于实施了注册管理，大大改善了系统的数据收集，知识共享和标准化的医疗实践，以实现最佳护理。现有有关19个国家肢端肥大症登记处的数据，涉及16,000多名患者。诊断的加权平均年龄为45.2岁，并且随着时间的推移似乎稳定。在75％的病例中发现了巨大腺瘤。接受手术的患者比例（> 80％）没有随时间变化。相反，放疗的使用减少了，而药物治疗的使用却增加了。如果以IGF-I水平判断，则肢端肥大症的控制在61.3％的患者中。随着时间的流逝，疾病控制率有所提高。这可能是由于治疗策略的发展。与国家流行病学，疾病控制或治疗策略有关的疾病合并症数据收集的全面性要差得多。报道最多的合并症是动脉高血压和糖尿病。有关死亡率趋势的数据是有争议的。在过去的十年中，癌症似乎已成为肢端肥大症患者死亡的主要原因，在这一时期中，预期寿命有所提高，而心血管死亡率却有所下降。总之，肢端肥大症登记处没有“先验”假设即可提供对该疾病的全局观察。这是最重要的，因为大量的数据和大量的合并症。这将有助于建立管理这种罕见疾病的指导方针。