Burden of Illness in Fibrodysplasia Ossificans Progressiva (FOP)
Our client is interested in measuring the burden of illness in FOP. Eligible patients will be asked to take an approximate 60 minute survey to measure the impact of the disease on their emotional and social well being, their daily activities, their utilization of healthcare resources and other issues. To learn more click [link will be available when survey opens].
Understanding Treatment Goals in Duchenne Muscular Dystrophy (DMD)
The purpose of this study is to improve the understanding of the treatment goals that a Duchenne patient or caregiver may be most interested in based on the severity of their disease. This study will achieve this objective by collecting robust evidence of the functional burden and the self-identified treatment goals of Duchenne patients and caregivers from their perspective, and use this evidence to help identify things important to Duchenne patients to measure in clinical trials.
Please note that this study does NOT aim to create or validate outcome measures to be used in future studies, but to inform the development and validation of future outcome measures or observer reported outcomes/patients reported outcomes.
Please visit us in late May to sign up for participation.
Understanding Acromegaly Treatment Perceptions and Satisfaction
Acromegaly is a disease caused by the overproduction of growth hormone, usually due to an adenoma of the pituitary gland. Understanding the patient’s perspective is important to physicians and policy makers in order to facilitate better health care experiences, ameliorate treatment burden and improve patients’ quality of life.
Engage is teaming up with a client and Tulane University’s Dr. Lizheng Shi to assess the experience of acromegaly patients treated with somatostatin analogues, and compare their perceptions to their physicians’ opinions understanding of their disease control, treatment satisfaction, and health-related quality of life (HRQoL) .
If you are an acromegaly patient treated with SSA’s who would like to participate in this study, please check back to learn more. We will be recruiting both patients and their physicians in the coming months.
Don’t see your disease in current studies? Click here so we can notify you when a study becomes available.