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National acromegaly registries.

Luigi Maione1, Philippe Chanson1

  • 1Assistance Publique-Hôpitaux de Paris (AP-HP), Service d'Endocrinologie et des Maladies de la Reproduction, Centre de Référence des Maladies Rares de l'Hypophyse, Hôpital de Bicêtre, F-94276 Le Kremlin-Bicêtre, France; UMR-S1185 Université Paris-Sud, Univ Paris-Saclay, F-94276 Le Kremlin-Bicêtre, France; Institut National de la Santé et de la Recherche Médicale (Inserm) U1185, F-94276 Le Kremlin Bicêtre, France.

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Summary
This summary is machine-generated.

Acromegaly registries show improved disease control due to medical therapies, with cancer emerging as a leading cause of death despite increased life expectancy. Data highlights the importance of registries for understanding this rare disease.

Keywords:
acromegalyepidemiologymortalityregistry

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Area of Science:

  • Endocrinology
  • Rare Diseases
  • Epidemiology

Background:

  • Acromegaly is a rare endocrine disorder causing multi-organ damage.
  • National registries have enhanced data collection and standardized care for acromegaly.
  • Over 16,000 patients across 19 registries provide extensive epidemiological data.

Purpose of the Study:

  • To analyze data from national acromegaly registries.
  • To assess trends in diagnosis, treatment, comorbidities, and mortality.
  • To understand the impact of registries on managing acromegaly.

Main Methods:

  • Systematic data gathering from 19 national acromegaly registries.
  • Analysis of epidemiological data, treatment strategies, disease control rates, and comorbidities.
  • Review of mortality trends and life expectancy in acromegaly patients.

Main Results:

  • Mean age at diagnosis is 45.2 years; macroadenoma is present in 75% of cases.
  • Surgical rates remain high (>80%), while radiotherapy use decreased and medical therapy increased.
  • Disease control (IGF-I levels) improved to 61.3%, attributed to medical advancements.
  • Arterial hypertension and diabetes are common comorbidities; cancer mortality increased while cardiovascular mortality decreased.
  • Life expectancy has improved in acromegaly patients.

Conclusions:

  • Acromegaly registries provide a comprehensive, unbiased view of the disease.
  • Improved disease control is linked to advancements in medical treatment strategies.
  • Registries are crucial for understanding acromegaly's complex comorbidities and guiding management guidelines.