The UK Acromegaly Register was established in 1997 and holds data on patients with acromegaly from 17 centres in the UK. Of 1466 records, 431 (29%) were diagnosed pre-1984, 580 (40%) between 1984 and 1993 and 455 (31%) between 1994 and 2003.
Surgery was and remains the most frequently applied primary treatment for acromegaly: 46% of cases pre-1984, 53% 1994-2003. The proportion treated by surgery alone has risen from 16% to 28% in 1994 to 2003 (P<1x10-4).
The proportion having primary medical treatment has risen from 26% to 44% (P<1x10-8). There has also been a significant increase in patients receiving medical treatment alone from 7% to 20% in the last decade (P<1x10-8).
Between 1994 and 2003 the use of somatostatin analogues has risen, from 30% to 80% and the use of dopamine agonists has fallen from 91% to 45% over this period (both P<1x10-10).
The use of radiotherapy has significantly declined from 1984 to 2003 (69% to 30% of all cases).
The proportion of patients requiring all three modalities of therapy has not changed over the study period (25%).
We have also analysed the time to presentation and complication rates. Mean time to diagnosis has not changed (4.1 years). Also, the proportion of patients with hypertension (41%) diabetes mellitus (12%) and visual field defects (11%) at presentation has not changed.
The frequency of microadenomas has increased (17% pre 1984; 26% 1994-2003) (P=0.0014).
The UK Acromegaly Database has a uniquely large cohort of patients. The proportion of patients receiving medical treatment prior to surgery and the increasing numbers of patients receiving surgery alone reflects the improved efficacy of both surgical and medical treatment for acromegaly. With completion of the data set in the next year, important epidemiological studies will be possible.
The UK Acromegaly Study Group is supported by an unrestricted educational grant from Novartis.