The development of HDQLIFE™ involved an interdisciplinary group of investigators from the University of Michigan as well as several experts from 16 academic sites.

Principal Investigator: Noelle Carlozzi, Ph.D.

Dr. Carlozzi is an Associate Professor and Director of the Center for Clinical Outcomes Development and Application (CODA) within the Department of Physical Medicine & Rehabilitation at the University of Michigan. With a broad background in clinical psychology and specific training in neuropsychology, she is an expert in outcomes measurement development, measurement application, and cognitive test development. Much of her work involves measurement development including both neuropsychological test development and patient-reported outcome [PRO] measurement development using state-of-the-art item response theory-based methods to develop computer adaptive tests (CATs). Her research portfolio includes experiences as Principal Investigator (PI) and Co-Investigator (Co-I) on several extramurally funded projects for a variety of different clinical populations (Huntington disease, traumatic brain injury, caregivers of traumatic brain injury, spinal cord injury, stroke, and nephrotic syndrome). Of note is the development of the HDQLIFE measurement system, a PRO measurement system that evaluates health-related quality of life that is specific to Huntington disease, and the TBI-CareQOL measurement system, a PRO measurement system that evaluates health-related quality of life that is specific to caregivers of persons with traumatic brain injury. Dr. Carlozzi also has expertise in psychometrics, as well as the application of outcomes assessment (both PROs and neuropsychological tests); much of this work includes establishing reliability and validity data for PROs that examine health-related quality of life, with an emphasis on PROMIS® and Neuro-QoL™ measures. She also frequently consults with different clinical experts with an interest in utilizing PROs or the NIH Toolbox in research or clinical care. More recently, Dr. Carlozzi’s research portfolio has included research studies using outcomes measurement in innovative ways, such as utilization of mobile health applications to evaluate real-time assessment of symptoms and functioning.

Collaborating Sites

Other Collaborators

  • Tatiana Foroud, PhD, Indiana University
  • Samuel Frank, MD, Beth Israel Deaconess Medical Center
  • Rebecca Ready, PhD, University of Massachusetts Amherst
  • Ira Shoulson, MD, Georgetown University
  • Julie Stout, PhD, Monash University

Community Partners