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Measuring Communication Ability in Rare Neurodevelopmental Disorders: Scaling up a Measurement Model

November 19, 2020 - 3:30pm to 5:00pm
Christy Zigler, PhD, Assistant Professor in Population Health Sciences

Dr. Zigler will discuss:

-The development process of the Observer-Reported Communication Ability (ORCA) measure for individuals with Angelman syndrome.

-The current status of implementation of the ORCA in clinical trials.

-Plans for expansion of the ORCA into other rare neurodevelopmental disorder.

Kevin Weinfurt, PhD, Professor and Vice Chair of Research in Population Health Sciences will be the discussant.

About Our Speaker

Dr. Zigler is part of the Center for Health Measurement. A psychometrician and statistician by training, she is an expert in the development and evaluation of clinical outcome measures. Her specialty is in designing patient-centered tools for children with rare diseases. She recently developed a patient-reported outcome measure to capture quality of life impact in children and adolescents with localized scleroderma, and is collaborating with a multidisciplinary team to adapt the measure for adults. She also is working with the Foundation for Angelman Syndrome Therapeutics (FAST) to design and evaluate a caregiver-reported measure to assess communication changes in individuals with Angelman Syndrome. The resulting tool will serve as an outcome measure in future clinical trials.

Dr. Zigler received her PhD in Research Methodology from the University of Pittsburgh and her MSEd in Counseling Psychology from the University of Miami.

Zoom Info:https://duke.zoom.us/j/92488659532 or Meeting ID 924 8865 9532