The Mexican Acromegaly Registry: Clinical and Biochemical Characteristics at Diagnosis and Therapeutic Outcomes

• Published in: The journal of clinical endocrinology and metabolism 2016-11, Vol.101 (11), p.3997-4004
• Main Authors: Portocarrero-Ortiz, Lesly A, Vergara-Lopez, Alma, Vidrio-Velazquez, Maricela, Uribe-Diaz, Ana María, García-Dominguez, Avril, Reza-Albarrán, Alfredo Adolfo, Cuevas-Ramos, Daniel, Melgar, Virgilio, Talavera, Juan, Rivera-Hernandez, Aleida de Jesus, Valencia-Méndez, Carla Valentina, Mercado, Moisés
• Format: Article
• Language: English
• Subjects: Acromegaly - etiology; Acromegaly - prevention & control; Adenoma - diagnosis; Adenoma - epidemiology; Adenoma - physiopathology; Adenoma - therapy; Adult; Cohort Studies; Combined Modality Therapy; Female; Follow-Up Studies; Growth Hormone-Secreting Pituitary Adenoma - diagnosis; Growth Hormone-Secreting Pituitary Adenoma - epidemiology; Growth Hormone-Secreting Pituitary Adenoma - physiopathology; Growth Hormone-Secreting Pituitary Adenoma - therapy; Hormone Replacement Therapy - adverse effects; Hospitals, Public; Humans; Hypophysectomy - adverse effects; Male; Mexico - epidemiology; Pituitary Gland - drug effects; Pituitary Gland - physiopathology; Pituitary Gland - radiation effects; Pituitary Gland - surgery; Practice Patterns, Physicians; Prevalence; Radiotherapy - adverse effects; Registries; Retrospective Studies; Somatostatin - analogs & derivatives; Somatostatin - therapeutic use; Treatment Outcome
• ISSN: 0021-972X; 1945-7197
• DOI: 10.1210/jc.2016-1937

Context: Acromegaly is a systemic disorder caused by a GH-secreting pituitary adenoma. As with other rare diseases, acromegaly registries developed in various European countries have provided us with important information. Objective: The objective of the study was to analyze the epidemiological, clinical, biochemical, and therapeutic data from the Mexican Acromegaly Registry (MAR). Setting: The setting of the study was a nationwide patient registry. Design and Methodology: The MAR was created in 2009. It gathers data from 24 participating centers belonging to three different institutions using a specifically designed on-line platform. Only patients diagnosed after 1990 were included in the program. Results: A total of 2057 patients (51% female, mean age at diagnosis 41.1 ± 24.5 y) have been registered for an estimated prevalence of 18 cases per 1 million inhabitants. Hypertension, glucose intolerance, diabetes, and dyslipidemia were present in 27%, 18.4%, 30%, and 24% of the patients, respectively. The IGF-1 level at diagnosis and the concomitant presence of hypertension were significantly associated with the development of diabetes. Transsphenoidal surgery was the primary treatment in 72% of the patients. Pharmacological treatment, mostly with somatostatin analogs, was administered primarily and adjunctively in 26% and 54% of the patients, respectively. Treatment choice varied among the three participating institutions, with the predominance of pharmacological therapy in two of them and of radiation therapy in the third. Therapeutic outcomes were similar to those reported in the European registries. Conclusions: The MAR is the largest and first non-European registry of the disease. Our findings highlight important within-country differences in treatment choice due to variations in the availability of resources. The MAR collects data on 2057 patients with acromegaly showing a considerable interinstitutional variation in treatment modality choice due to differences in the availability of resources.