Disease Directory Acromegaly
Endocrine

Acromegaly

Also known as: Growth hormone excess, GH-secreting pituitary adenoma, somatotropinoma, IGF-1 excess

Prevalence

40–70 per million

Onset

Adults, typically in the fourth to sixth decade

Type

Sporadic (vast majority); rarely MEN1 or FIPA-associated

About Acromegaly

Acromegaly is caused by chronic hypersecretion of growth hormone, almost always from a GH-secreting pituitary adenoma (somatotropinoma), resulting in elevated IGF-1 levels and progressive somatic overgrowth of acral and soft tissues, organomegaly, and metabolic disturbances. The diagnosis is typically delayed by seven to ten years due to the insidious onset of physical changes, during which time cumulative exposure to excess GH and IGF-1 drives substantial cardiovascular, respiratory, and metabolic comorbidities that are major determinants of mortality. Treatment aims to normalise GH and IGF-1 levels through surgery, somatostatin receptor ligands, dopamine agonists, GH receptor antagonism, or radiotherapy, with disease control defined as IGF-1 within the age-normalised reference range.

Common Clinical Features

Enlargement of hands and feet with ring and shoe size increase Coarsening of facial features with frontal bossing and prognathism Macroglossia and dental spacing Hyperhidrosis and oily skin Arthropathy and joint pain Sleep apnoea (obstructive and central) Hypertension, cardiomegaly, and left ventricular hypertrophy Headache and visual field defects from local tumour mass effect

Clinical Trial Eligibility Tips

What to know before applying to Acromegaly trials.

Active acromegaly confirmed by failure to suppress GH below 1 ng/mL during oral glucose tolerance test plus elevated age-adjusted IGF-1 is required for most interventional trials; bring recent pituitary MRI and hormone results.

Prior treatment history (surgery, radiotherapy, and pharmacological agents including somatostatin analogues, pegvisomant, and cabergoline) affects eligibility for trials of novel agents; doses and duration should be well documented.

Comorbidity burden (sleep apnoea severity, cardiac function, glucose metabolism) is assessed at screening; a sleep study, echocardiography, and HbA1c within six months of enrolment are commonly required.

Patient Resources

Patient Organization

Acromegaly Community

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Natural History Registry

Acromegaly Database Consortium (AcroDB)

Join registry ↗

Orphanet

European reference resource for rare diseases (ORPHA:963)

View on Orphanet ↗

NORD

National Organization for Rare Disorders

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Find recruiting Acromegaly trials

Search 500,000+ studies from ClinicalTrials.gov, filtered for Acromegaly. Updated daily.

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