People living with acromegaly deserve more. Sign up to be the first to learn about resources and treatment options for acromegaly.
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People living with acromegaly deserve more. Sign up to be the first to learn about resources and treatment options for acromegaly.
GET NEWS
3 in 5 people
treating their acromegaly with injections say their symptoms are not well controlled.¹
62% of people
treating acromegaly with injectable treatment options experience symptoms that interfere with their daily life.2
85% of patients
would prefer to avoid injections if another treatment were available.3
This information is based on the results of multiple recent studies that examined outcomes reported by people living with acromegaly.
Medical researchers from Tulane University asked a group of patients about their acromegaly treatment experiences. The results may surprise you. Click the link below to see if you agree.
TAKE THE QUIZYou may be able to help make a difference in other people’s lives by sharing your personal experience with acromegaly today. The Management of Acromegaly Registry (MACRO Registry) is a research study that may have a profound impact on how acromegaly is understood and treated—but we need your help.
Joining the MACRO Registry will give you the opportunity to share your experience with acromegaly and help contribute to a better understanding of what living with acromegaly really means for patients. Through confidential and secure online questionnaires, you’ll be able to report your experience every 3 months, for up to 3 years, and will be paid for your time to complete the questionnaires–$25 for each set of questionnaires.
Any study is only as good as those who contribute to it. By participating in the MACRO Registry and sharing your experience, you may be able to help fellow members of the acromegaly community, both now and in the future.
Prepare for an open discussion with your doctor that goes beyond your IGF-I and GH levels and focuses on your overall experience managing acromegaly, including symptoms. Here are some questions to ask yourself before your next visit:
With current treatment options, living with acromegaly can be hard. But after years with no significant advancements for patients with acromegaly, there are several treatment options in clinical development.
Painful monthly injections, disruptive trips to the doctor, the wear-off effects: people living with acromegaly deserve some good news.
Hear other people living with acromegaly discuss their experience managing their disease and their thoughts on how people can be their own best advocates.
1. Geer EB, Sisco J, et al. Observed discordance between outcomes reported by acromegaly patients and their treating endocrinology medical provider. Pituitary. 2019 December 5. (doi:10.1007/s11102-019-01013-2) 2. Strasburger CJ, Karavitaki, N, et al. Patient-reported outcomes of parenteral somatostatin analogue injections in 195 patients with acromegaly. European Journal of Endocrinology, 2016. (doi:10.1530/EJE-15-1042) 3. Liu S, Adelman DT, et al. Patient-centered assessment on disease burden, quality of life, and treatment satisfaction associated with acromegaly. Journal of Investigative Medicine. 2017. (doi:10.1136/jim-2017-000570) 4. Biermasz N. New medical therapies on the horizon: oral octreotide. Pituitary. 2017. (doi:10.1007/s11102-016-0785-3) 5. Fleseriu M, Fogelfeld L, et al. Development of a novel patient-reported measure for acromegaly: the Acro-TSQ. Pituitary. 2019. (doi:10.1007/s11102-019-00986-4)