Brief Title
Epidemiology of Acromegaly in Denmark 1991-2010
Official Title
Incidence and Late Prognosis of Acromegaly in Denmark From 1991 - 2010: Twenty Years of Medical Treatment
Brief Summary
Aim: To assess the incidence rate, morbidity and mortality of acromegaly in Denmark.
Detailed Description
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.
Study Type
Observational
Primary Outcome
Mortality of acromegaly
Secondary Outcome
• Incidence of Acromegaly
Condition
Acromegaly
Study Arms / Comparison Groups
acromegaly
Description: patients with acromegaly
Publications
* Includes publications given by the data provider as well as publications identified by National Clinical Trials Identifier (NCT ID) in Medline.
Recruitment Information
Estimated Enrollment
500
Start Date
February 2013
Completion Date
March 2015
Primary Completion Date
March 2015
Eligibility Criteria
Inclusion Criteria:
- diagnosed with acromegaly in years 1991-2010
Gender
All
Ages
N/A - N/A
Accepts Healthy Volunteers
No
Contacts
Jens Otto Jorgensen, professor, ,
Location Countries
Denmark
Location Countries
Denmark
Administrative Informations
NCT ID
NCT01752621
Organization ID
3-3013-97/1/HKR
Secondary IDs
11-88-37-29
Responsible Party
Sponsor
Study Sponsor
University of Aarhus
Study Sponsor
Jens Otto Jorgensen, professor, Study Director, MEA AUH
Verification Date
December 2014