Outcome Measurement Assessment in Communication for Patients with Angelman Syndrome
Outcome Measurement Assessment in Communication for Patients with Angelman Syndrome
The goal of this grant is to develop an outcome measure to assess caregiver observations in their child’s communication ability in expressive, receptive and pragmatic communication. The goal is to develop a measurement tool that can be used pre-competitively in human clinical trials that can granularly measure a non-verbal patient’s ability to communicate. This tool is designed specifically for individuals living with AS.
Principle Investigator
Bryce Reeve
Dr. Bryce Reeve is a Professor of Population Health Sciences and Professor of Pediatrics at Duke University School of Medicine. He also serves as Director of the Center for Health Measurement since 2017. Trained in psychometric methods, Dr. Reeve’s work focuses on assessing the impact of disease and treatments on the lives of pediatric and adult patients and their caregivers. This includes the development of clinical outcome assessments using both qualitative and quantitative methods, and the integration of patient-centered data in research and healthcare delivery settings to inform decision-making. From 2000 to 2010, Dr. Reeve served as Program Director for the U.S. National Cancer Institute and oversaw a portfolio of health-related quality of life research in cancer patients. From 2010 to 2017, he served as Professor of Health Policy and Management at the University of North Carolina. From 2011-2013, Dr. Reeve served as President of the International Society for Quality of Life Research (ISOQOL). In 2015, he received the John Ware and Alvin Tarlov Career Achievement Prize in Patient-Reported Outcomes Measures. He has co-authored over 390 publications in peer-reviewed scientific journals. In 2017, 2018, 2019, 2021, 2022, and 2023, he was ranked in the top 1% most-cited in his respective field over the past 11-year period. With support from the FAST, Dr. Reeve has led a multi-disciplinary team to design the Observer-Reported Communication Ability (ORCA) measure, which assesses communication ability in individuals with Angelman syndrome.
