Recent Funding Announcements
Measuring Racial Equity and Institutional Racism in Primary Care (EQUIP)
Kimberly Johnson, MD, MHS; Amy Corneli, PhD, MPH; and Bryce Reeve, PhD
NIH/NIHMD R01: Collaboration
Black patients receive lower quality healthcare than their White counterparts. This study will develop a measure to identify structures and processes within primary care practices that may either contribute to these disparities or improve equitable care for Black patients.
A Clinical Trial Readiness Study of Patient-Reported Outcome Measures in Thrombotic Thrombocytopenic Purpura (THINK-TTP)
Theresa Coles, PhD, and Toyosi Onwuemene, MD
NIH/NCATS R21 Award
This research addresses a critical barrier to immune thrombotic thrombocytopenic purpura (iTTP) clinical trial readiness – the absence of validity evidence for clinical outcome assessments (COAs) measuring cognitive function. By developing a measurement strategy for cognitive function in patients with iTTP, this research will facilitate the design and conduct of future studies using COAs as clinical trial endpoints.
Patient-focused Approaches to Rigorous Clinical Research (PARCR) Project
Kevin Weinfurt, PhD is launching the Patient-focused Approaches to Rigorous Clinical Research (PARCR) Project, a 3-year initiative funded by Triangle CERSI. Members of CHM will collaborate alongside FDA scientists, Vector Psychometric Group, LLC, Symphony Learning Solutions, and UNC-Chapel Hill. The mission of PARCR is to develop and disseminate innovative training resources focused on patient-centered measurement and clinical outcome assessments (COAs), covering methodological recommendations in the FDA’s Patient-Focused Drug Development Guidance Series.
Sharing Exciting Publications
Evon D, Reeve BB. Assessing patient-reported outcomes in primary sclerosing cholangitis: an update. Current Opinion in Gastroenterology 2025;41(2):59-66. DOI: 10.1097/MOG.0000000000001075 https://journals.lww.com/co-gastroenterology/fulltext/2025/03000/assessing_patient_reported_outcomes_in_primary.2.aspx-
- This article highlights an exciting collaboration between the University of North Carolina and Duke University in their progress toward developing patient-reported outcome measures tailored to individuals with primary sclerosing cholangitis, advancing the field toward regulatory-grade tools for evaluating treatment benefit in clinical trials.
Aponte-Colon DA, Tua-Caraccia RD, Chen D, Aksenov LI, Thibadeau J, Routh JC, Reeve BB. Financial toxicity in spina bifida: development of a patient and caregiver questionnaire. Urology (online first: March 4, 2025):1-8. https://doi.org/10.1016/j.urology.2025.02.041
- This study developed and validated the first tools to assess the financial strain experienced by people living with spina bifida and their caregivers—paving the way for better support and more informed care decisions.
Shepherd-Banigan, M., McFatrich, M., Namestnik, A., Lucas, N., Çoban, M., Kent, E.E., Shapiro, A., Clark, A.G., Gierisch, J.M., Tan, K.R., Cantrell, S. and Goldstein, K.M. (2025). Reframing caregiver experiences: a qualitative evidence synthesis, International Journal of Care and Caring, Early View, DOI: 10.1332/23978821Y2025D000000111
- CHM team members recently collaborated with Duke University colleagues to conduct a qualitative evidence synthesis to define caregiving experiences through the perspectives of caregivers. The researchers reviewed published qualitative literature representing studies across caregiving health contexts, with the following key question: how do family caregivers describe their experiences of caring for adults or children with a serious illness that is associated with significant functional impairment?
Jang, D. W., Lee, H.-J., Hachem, R. A., Goldstein, B. J., Witsell, D. L., Godley, F., … Coles, T. (2025). Utility of Existing Patient-Reported Outcome Measures for Identifying Non-Rhinogenic Facial Pain.Laryngoscope. https://doi.org/10.1002/lary.32147
- CHM team members (Dr. Theresa Coles, coPI) and Dr. David Jang (coPI), Rhinology, found that existing patient-reported outcome measures (PROMs) for screening have limitations when used to identify non-rhinogenic facial pain with migraine etiology (NRFP) in patients presenting with facial pain/pressure. Given the high incidence of NRFP, a new measure could significantly improve healthcare efficiency.
Upcoming Events
Center for Health Measurement: Upcoming Conference Presentations
This fall, our team from the Center for Health Measurement (CHM) in Duke’s
Department of Population Health Sciences will be sharing our latest research at
national and international meetings. We look forward to attending these
conferences to share our work and learn from others!
🌟 Catch us at the 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
🌟 Join us at the 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
🌟 Meet us at the ISOQOL Annual Conference (October 24–25, 2025)
* Fiorella Guerrero: Using Item Response Theory for Validity Evidence with the
DASS-21 in Rural Peru (Oct 24)
* Theresa Coles: Development of a Conceptual Model for Cognitive Impairment in
Thrombotic Thrombocytopenic Purpura (Oct 24)
* Fiorella Guerrero: Quality of Life in the Rural Highlands of Peru (Oct 25)
* Laura Mkumba: Understanding the Natural History of Cognitive Impairment in
Immune Thrombotic Thrombocytopenic Purpura: Qualitative Perspectives of
Patients and Observers (Oct 25)
Check back regularly to view upcoming CHM events and presentations.
Recent Events
Minji Lee, PhD and Kathleen Yost, PhD, Mayo Clinic, presented, “Defining and Personalizing Meaningful Change in Advanced Cancer Symptoms: From Qualitative Insights to Clinical Trial Feasibility” at our CHM Monthly Insights aNd Talks (MINT) on April 17, 2025