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SPONSORED RESEARCH: Modeling Inter-individual Differences to Address Pain of Sickle cell disease (MIDAS)

April 14, 2026

jinshei

Pictured Above: Jin-Shei Lai, PhD, OTR/L

Jin-Shei Lai, PhD, OTR/L, Professor at Northwestern University Department of Medical Social Sciences received a grant titled, “Modeling Inter-individual Differences to Address Pain of Sickle cell disease (MIDAS)” from the National Institute of Neurological Disorders and Stroke. The primary investigator is Renee Manworren, PhD, MSN, BSN, at the University of Texas Arlington.

What are the aims of the project? 

This project aims to transform pain care for Black adolescents and young adults living with sickle cell disease (SCD), a population that faces a disproportionate burden of severe pain, frequent hospitalizations, and inequities in treatment.

What are your next steps?

Supported by the National Institutes of Health HEAL Initiative (Helping to End Addiction Long-term®), the study will follow 1,000 young people with SCD across eight health systems and 11 sites in Chicago, Dallas-Fort Worth, Austin, Kansas City, and Ann Arbor. By collecting longitudinal, whole-person data, including genetic, clinical, social, and patient-prioritized information, the study team will examine the biological and lived-experience factors that shape pain and response to treatment. Advanced computational modeling will be used to identify those at greatest risk for severe vaso-occlusive pain, chronic daily pain, and poor outcomes.

What do you hope will come out of this funded research?

This work will generate actionable evidence to support more precise, equitable, and effective pain care for young people with SCD. 

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