SSRI affiliate has secured major federal funding to study why sickle cell disease patients experience pain so differently, and what that means for their care.
The Genomics, Race, Identity, Difference (GRID) Center has received a five-year, $5.1 million grant from the National Institutes of Health (NIH) to conduct one of the most comprehensive studies of pain in sickle cell disease ever undertaken. The funding comes through the NIH’s HEAL (Helping to End Addiction Long-term) Initiative, a federal effort focused on finding better ways to manage pain and reduce dependence on opioids. The project is led by a team of five principal investigators, with GRID Director Dr. Charmaine Royal serving as the lead contact. The team brings together researchers, doctors, and patients from Duke University and institutions across the United States.
Understanding the Disease and the Challenge
Sickle cell disease (SCD) is an inherited blood disorder that affects the shape of red blood cells. Normally, red blood cells are round and flexible, moving easily through blood vessels. In people with SCD, these cells become stiff and crescent shaped, causing them to get stuck, block blood flow, and deprive tissues of oxygen. The result is severe, recurring pain that is the defining feature of the disease and the leading reason patients end up in the hospital. Over time, poorly managed pain contributes to serious complications and shorter lifespans.
One of the greatest challenges in treating SCD is that pain is not the same for everyone. Some patients experience frequent, intense episodes. Others develop chronic, day to day pain that never fully goes away. The type, location, duration, and severity of pain can vary widely, even among people with the same genetic form of the disease. Despite decades of research, doctors still lack the tools to predict which patients will struggle most, why some respond better to treatment than others, or how to tailor care to an individual. No study has yet mapped out how all the relevant factors work together to shape a person’s pain. This project sets out to change that.
What the Research Will Do
The team will follow 1,250 people with SCD, aged 15 and older, across multiple sites over three years. Participants will be drawn from an existing national registry called GRNDaD (Globin Research Network for Data and Discovery), which already includes data from more than 4,500 patients. At three points over the study period, participants will complete detailed assessments covering seven areas of their lives: their biology and physical health, clinical history and treatments, daily behaviors, mental health and coping, the environments they live and work in, their cultural and community context, and the structural barriers they face in accessing care.
The study has three main goals. First, researchers will use existing registry data to group patients into basic pain categories, giving the team a starting point for understanding who tends to experience greater or lower pain burden. Second, with richer data collected from the full cohort, they will build more precise pain profiles that account for pain severity, how often acute episodes occur, what type of pain patients feel, and how pain affects daily life. Third, using advanced machine learning and statistical tools, the researchers will analyze how factors across all seven areas interact to shape pain. This will help explain not just what kind of pain a person experiences but why, and ultimately which treatments are most likely to help which types of patients.
Why It Matters
Better understanding of SCD pain could lead directly to better care, giving doctors tools to identify high risk patients early and choose treatments matched to the individual rather than relying on a one size fits all approach. The study’s whole person methods could also be applied to other conditions where pain is difficult to manage and treatment response is unpredictable.
Sickle cell disease has long been underfunded relative to other conditions of similar severity, a disparity tied to the fact that it disproportionately affects Black Americans. This grant represents a meaningful investment in changing that trajectory. Because many SCD patients currently rely on opioids as one of the few effective options available, new knowledge about pain mechanisms and treatment response could also contribute to the development of alternatives, directly supporting the NIH HEAL Initiative’s broader mission of addressing the national opioid crisis.
By bringing together a diverse, multi institution team including patients as active partners in the research, and by examining pain from every angle simultaneously, this work has the potential to transform how sickle cell disease is understood, treated, and lived with.
This project is funded by the National Institutes of Health through its HEAL Initiative (Grant R01). The GRID Center is based within the Social Science Research Institute at Duke University.