Jason Crompton, PharmD, Global Medical Director of the Acromegaly Program at Chiesi Rare Diseases, discusses disparities between biochemical control and symptom burden in patients with acromegaly.
Acromegaly is a hormonal disorder that results from the overproduction of growth hormone in the pituitary gland. It is most often diagnosed in middle-aged adults, although symptoms can appear at any age. Signs and symptoms include abnormal growth and swelling of the hands and feet; bone changes that; alter various facial features; arthritis; carpal tunnel syndrome; enlargement of body organs; and various other symptoms. The condition is usually caused by benign tumors on the pituitary. Rarely, it is caused by tumors of the pancreas, lungs, and other parts of the brain.
ENDO Poster
Data was presented at the 2025 ENDO annual meeting as well as at the International Pituitary Society 2025 congress on the Management of Acromegaly Registry. This registry is a U.S. based database of patients with active acromegaly who are on any currently available treatments. Every three months, patients and physicians participate in surveys on biochemical control, symptoms, quality of life, and health resource utilization.
In an initial analysis of thedataset, it was observed that over 85% of patients on monotherapy have biochemical control, and around 80% of patients on combination therapy have biochemical control. However, about 20% of these patients still do not have well-controlled symptoms.
Mr. Crompton explains obvious discordance between physician and patient assessments of symptom control, highlighting the need to address the disparity between reported biochemical control and existing symptom burden. Education and resources are needed to help patients understand how to better communicate their symptom burden to physicians so that it can be taken care of appropriately. He notes that this starts with empowering patients to speak up and making physicians aware of the impact of symptoms on quality of life and daily activities.
For more information on acromegaly and other rare endocrine disorders, visit https://checkrare.com/diseases/endocrine-disorders/