Modeling Inter-individual Differences to Address Pain of Sickle Cell Disease(MIDAS)
An NIH-funded, multi-site study to advance precision pain management for adolescents and young adults with sickle cell disease.
1R01HL178882-01
What is MIDAS
MIDAS (Modeling Inter-individual Differences to Address Pain of Sickle Cell Disease) is a five-year study focused on adolescents and young adults living with sickle cell disease (SCD). The project collects whole-person health data including genetics, social determinants of health, and psychosocial variables to understand why pain experiences vary so widely across individuals. By building computational models from these data, the MIDAS team aims to uncover the biological and psychosocial mechanisms behind pain and accelerate the development of precision, personalized approaches to pain care.
Unlike traditional approaches, MIDAS brings together expertise in genomics, neuroscience, pain management, nursing, medicine, data science and the lived experiences of people with SCD to capture a full picture of what drives pain in SCD. This means studying not only the physical aspects of pain, but also lifestyle, stress, environment, and psychosocial conditions that shape how pain is experienced and managed.
Ultimately, MIDAS is more than a research study. It is a step toward transforming care for SCD. By identifying patterns that predict pain episodes and treatment response, the study seeks to provide clinicians with tools to deliver the right care at the right time, improving quality of life for thousands of people living with SCD.
Engaging the Sickle Cell Community to Guide Every Step
Patient Perspective ( from SCD lived experience): Living with sickle cell pain every day is exhausting. Being part of MIDAS means my experiences are finally shaping research that could change care for the future.
Caregiver Voice: Families like ours often feel invisible in healthcare decisions. With MIDAS, caregivers have a seat at the table to guide how pain is understood and treated.
Advisory Board Role: The MIDAS Advisory Board ensures that people with SCD are not just patients, but partners in designing the study and shaping how results are shared.
The Challenge of Pain in Sickle Cell Disease
Prevalence
About 100,000 African Americans live with Sickle Cell Disease
Hospitalizations
On average, people with SCD are hospitalized three times per year for acute pain. 10% of people with SCD account for 50% of hospitalizations.
Adolescents
As adolescents transition to adulthood, pain becomes more frequent and severe, increasing the risk of chronic daily pain and early death.
A Whole Person, Data-Driven Study
Aim 1: Collect Data
Aim 2: Predict Pain Outcomes
Aim 3: Prevent Chronic Pain
We will enroll 1,000 Black adolescents and young adults (10 – 25) years of age with SCD a sample drawn from the estimated 100,000 Black Americans living with SCD in the U.S. Participants will be recruited from Chicago, Dallas–Fort Worth, Austin, Kansas City, and Ann Arbor.
From each participant, we will gather whole-person health data: genetic pain variants, medical history, hospitalizations, social determinants of health, and patient- and caregiver-reported experiences. This dataset will capture the diverse realities of living with pain from SCD and guide precision approaches to care.
Using data from 1,000 Black American adolescents and young adults with SCD across three U.S. regions. We will train and test machine learning models including stochastic modeling, optimization, and natural language processing to estimate the likelihood of frequent hospitalizations for acute vaso-occlusive crisis pain. By identifying predictors of high hospital use, we will evaluate treatment efficacy (opioid and non-opioid) and move toward tailored, precision pain management strategies.
We will use the same dataset and apply predictive modeling, AI-driven risk stratification, and advanced statistical approaches to determine the age at which adolescents with SCD transition to develop chronic daily pain. By integrating genetic pain variants, biopsychosocial data, and social determinants of health, these models will identify modifiable risk factors that contribute to the onset of chronic pain. Insights from this work will lay the foundation for future precision prescribing, early intervention, and prevention strategies that reduce suffering, hospitalizations, and long-term disability.
Meet the MIDAS Team
Key investigators and collaborators:
Renee Manworren, PhD, APRN, PCNS-BC, FAAN – Principal Investigator (UT Arlington)
Feinuo Sun, PhD – Co-I, College of Nursing and Health Innovation (UT Arlington) Pain Demographer
Mari Tietze, PhD, RN – Co-I, College of Nursing and Health Innovation (UT Arlington) Health Informaticist
Jay Rosenberger, PhD – Co-I, College of Engineering (UT Arlington) Computational Modeling & Stochastic Optimization
Chengkai Li, PhD – Co-I, College of Engineering (UT Arlington) Natural Language Processing
Erin Young, PhD – Co-I, University of Kansas Medical Center (Kansas City), Pain Geneticist
Olivia Veatch, PhD – Co-I, University of Kansas Medical Center (Kansas City), Genetimatrician
Diego Reynoso, MD – Consultant, pediatric anesthesiologist with SCD
Dwayne Okonma, BS – Graduate student and patient advocate with SCD
Jin Shai-Li, PhD, OT – Feinberg School of Medicine (Northwestern University), Psychometrician, Statistician, pediatric PROMIS measures, and developer
Kimberly Wittmayer, MSN, APRN, PCNS-BC, PMGT-BC, AP-PMN – Site PI, Advocate-Aurora Children’s Hospital, Oaklawn & Park Ridge, IL
Daniel Choi, MD – Site Co-I, Advocate-Aurora Children’s Hospital, Oaklawn & Park Ridge, IL
Clarissa Johnson, MD – Site PI, Cook Children’s Health Care System, Ft Worth, TX
Timothy L. McCavitt, MD, MS – Site Co-I, Cook Children’s Health Care System, Ft Worth, TX
Olufunke Yetunde Martin, MD – Site Co-I, Children’s Health (Dallas & Plano, TX) & UT Southwestern
Lindsey Patton, PhD, APRN, PCNS-BC – Site PI, Children’s Health (Dallas & Plano, TX)
Radhika Peddinti, MD – Site PI, The University of Chicago Medicine; Comer Children’s Hospital
Eric L. Scott, PhD – Site Co-PI, University of Michigan, Mott Children’s Hospital
Elizabeth A. Pasternak, MS, RN, CHPPN – Site Co-PI, University of Michigan, Mott Children’s Hospital
Rae Ann Kingsley, DNP, APRN, AP-PMN – Site PI, Children’s Mercy Hospital, Kansas City, MO
Christina Cotton, DNP, APRN, CPNP-AC/PC – Site PI, Dell Children’s Medical Center, Austin, TX
Alicia Chang, MD – Site Physician PI, Dell Children’s Medical Center, Austin, TX
Dr. Manworren leads the project, bringing expertise in pediatric pain management and pharmacogenetics. Collaborators span nursing, medicine, public health, engineering, data science, health informatics, genetics, and people with the lived experience of SCD and pain.
Shaping the Future of Pain Management
By integrating genetics, social determinants of health, and lived experience, MIDAS is creating models to predict pain and guide precision prescribing. This will help reduce unnecessary suffering, lower hospitalizations, and support equity in care for adolescents and young adults with SCD. In the future, instead of trial-and-error prescribing, health care providers will be able to deliver personalized pain management strategies that are safer, and more effective.
