CHM News & Events

Wednesday, March 25th, 12-1 PM ET.

Theresa Coles, PhD and Toyosi Onwuemene, MD, MS from Duke University School of Medicine will present at a PCORnet webinar. This webinar will feature the PCORnet Study entitled “A Clinical Trial Readiness Study of Clinical Outcome Assessments in TTP (THINK-TTP).” The speakers will describe how the study will identify reliable, valid, and responsive cognitive function assessments for use in TTP trials, and how the study’s approach to identifying measures—and sharing results publicly—will drive trial readiness and support patient-centered treatment development.

Our team from the Center for Health Measurement (CHM) shared our latest research at recent national and international meetings:

🌟 Child Neurology Society – 54th Annual Meeting (October 8–11, 2025)

* Grace Strong: Assessing Communication in Children with MECP2 Duplication Syndrome: Cognitive Interviews using the Observer-Reported Communication Ability (ORCA) Measure

* Bryce Reeve: Assessing the Communication Ability of Individuals with Rare, Neurodevelopmental Disorders: The ORCA Measure

🌟 ISOQOL Annual Conference (October 24–25, 2025)

* Fiorella Guerrero: Using Item Response Theory for Validity Evidence with the DASS-21 in Rural Peru

* Theresa Coles: Development of a Conceptual Model for Cognitive Impairment in Thrombotic Thrombocytopenic Purpura 

* Fiorella Guerrero: Quality of Life in the Rural Highlands of Peru 

* Laura Mkumba: Understanding the Natural History of Cognitive Impairment in Immune Thrombotic Thrombocytopenic Purpura: Qualitative Perspectives of Patients and Observers 

🌟  FAST ABOM-TRS Meeting and Global Science Summit (November 6, 2025)

* Abigail Rader: “What Does My Child's Score Actually Mean?” Enhancing Interpretation of the ORCA Measure Through the Design of Vignettes