Epidemiology of Acromegaly in Denmark 1991-2010

Study Overview
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Brief Summary
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Aim: To assess the incidence rate, morbidity and mortality of acromegaly in Denmark.

Detailed Description
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Background: Acromegaly is a rare disease caused by GH hypersecretion from a pituitary adenoma. The annual incidence is estimated to be 3-5/million with a prevalence of 100 - 150/million. The incidence rate is however uncertain since no nationwide surveys exist. If left untreated or poorly controlled the condition is associated with progressive morbidity and an excess mortality. The primary treatment is surgery, which however only provides a cure rate of ≈ 50 -60% due to the size of the tumour. The second line treatment today is medical treatment with slow release formulations of somatostatin analogs (SA) and, more recently, a specific GH antagonist. Accurate data on incidence rates and outcome of treatment are of obvious importance in order to provide optimal and evidence-based treatment for the disease. This is particularly relevant in light of the availability of new and effective treatment modalities such as the GH antagonist, the proper place of which in the treatment algorithm still remains controversial. Denmark holds a unique position in terms of epidemiological studies due to the existence of well organized databases which include all its inhabitants. A recognised problem with epidemiological surveys from specialised centres is whether the figures are representative for the general population. A nationwide Danish study will profit from the fact that every Danish citizen holds a unique ID number that makes it easy to retrieve and combine pertinent data regarding health, disease and death from different registries. The investigators have previously used this for a landmark survey of another rare endocrine disease, i.e. Cushing's syndrome. This publication has been cited more than 100 times. Aim: To assess the incidence rate, morbidity and mortality of acromegaly in Denmark.

Official Title
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Incidence and Late Prognosis of Acromegaly in Denmark From 1991 - 2010: Twenty Years of Medical Treatment

Conditions
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Acromegaly

Participation Criteria
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Eligibility Criteria
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Inclusion Criteria: diagnosed with acromegaly in years 1991-2010
Sexes Eligible for Study
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All

Accepts Healthy Volunteers
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No

Study Plan
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How is the study designed?
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Arms and Interventions

| Participant Group/Arm | Intervention/Treatment |
| --- | --- |
| acromegaly<br>patients with acromegaly | |
| comparison population<br>matched background population | |

What is the study measuring?
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Primary Outcome Measures

| Outcome Measure | Measure Description | Time Frame |
| --- | --- | --- |
| Mortality of acromegaly | Mortality and morbidity of acromegaly (MRR) | 3 years | 

Secondary Outcome Measures

| Outcome Measure | Measure Description | Time Frame |
| --- | --- | --- |
| • Incidence of Acromegaly | • Incidence of Acromegaly | 3 years | 
| prevalence rates of Acromegaly | prevalence rates of Acromegaly | 3 years | 

 Terms related to the study
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Keywords Provided by Centre Hospitalier Valida
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mortality, morbidity, incidence, prevalence, Acromegaly