Acromegaly is a rare chronic disease requiring life-long care by a specialist multidisciplinary team. Care of patients with acromegaly focuses on managing the tumour as well as the consequences of the metabolic effects of the disease. Patients frequently are required to be under the care of multiple health care providers who may have limited experience of patients with acromegaly. The aim of this study was to explore patient perspective and acceptance in use of an acromegaly specific hand-held personal health record and to monitor changes in health related quality of life during the period of the study using AcroQoL. The purpose of the hand held record is to act as a resource of information about acromegaly and it’s treatment options, how the disease and its effects may impact and as a record of the health checks, procedures and pathology findings that are performed over the patient’s journey with this disease. The impetus for the project evolved over several years of contact with patients attending the clinic and the conversations that occurred at the time of the injections of somatostatin analogues or SOM230 treatment administered intramuscularly to these acromegalic patients. The clinic experience was that there was a lack of easy to read but comprehensive information to help the patient and their family learn and understand about this disease and what to expect on this journey. Participation with the patient as an active member of the care team was the goal. This presentation will detail the process of developing a new patient resource, the piloting and feedback from patients and the monitoring of health related quality of life during the trial.