CHM News & Events

Two Black women of varying ages share a happy moment while looking at a laptop. The image is accompanied by the logo for the Center for Health Measurement and their tag line: person centered, evidence driven.

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.

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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.

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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

  • The first ever CHM Bakeoff will take place on June 23, 2025. The team is looking forward to getting together in person.
  • Be on the lookout for CHM researchers at the 32nd Annual International Society of Quality of Life Research (ISOQOL) Conference in Milwaukee Wisconsin in October 2025.

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