New App Uses Brain Imaging to Decode Pain in Sickle Cell Disease
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A groundbreaking study published November 12, 2025, offers a new approach to understanding and managing pain in individuals with sickle cell disease, leveraging advanced brain imaging and a novel digital tool called Painimation. The research, led by Carnegie Mellon University’s Wood Neuro Research Group and published in The Journal of Pain, aims to bridge the critical gap in pain interpretation between patients and clinicians.
Pain is a pervasive and complex challenge for those living with sickle cell disease, often proving difficult for healthcare providers to accurately assess. Traditional pain scales, which rely on subjective numerical ratings, frequently fall short in capturing the deeply personal and nuanced experience of pain.
The Carnegie Mellon team adopted a more human-centered approach, utilizing brain imaging to illuminate how pain is processed. “Traditional questionnaires only scratch the surface,” explained Joel Disu, first author of the paper and a biomedical engineering Ph.D. student. “They don’t capture the complexity or the internal experience of sickle cell pain. We wanted to see what happens in the brain when people describe their pain in a way that’s truer to how they actually feel it.”
How Painimation Reveals the Complexity of Pain
At the heart of the study is Painimation, an innovative app developed in collaboration with Dr. Charles Jonassaint of Emory University. Unlike conventional pain scales, Painimation allows patients to describe their pain using animated visuals, selecting descriptors like throbbing, stabbing, cramping, or shooting sensations.
Researchers then used ultra-high-resolution MRI data to compare brain connectivity patterns between 27 patients with sickle cell disease and 30 healthy individuals. The focus was on three key brain networks associated with pain perception: the default mode, salience, and somatosensory networks. The findings revealed significantly reduced connectivity across all three networks in patients with sickle cell disease, particularly in regions responsible for emotion, attention, and sensory processing.
A striking correlation emerged when the team linked imaging data to participants’ Painimation selections. Pain descriptors such as cramping and stabbing strongly correlated with changes in the somatosensory network, the brain region responsible for processing physical sensations like touch and pressure. Furthermore, patients who reported higher intensity levels for these sensations exhibited even greater disruption in those brain regions.
“This gives us a foundational step toward developing objective pain biomarkers,” Disu stated. “We can begin to see, in real time, how the quality and intensity of pain map onto the brain.”
Bridging the Gap in Pain Communication and Building Trust
Beyond its scientific implications, the study addresses a critical issue in healthcare: the frequent misunderstanding of pain in sickle cell disease. This misunderstanding often leads to mistrust between patients and providers, with many patients choosing to manage their pain crises at home due to fears of dismissal, financial burdens, or being wrongly labeled as drug-seeking.
“Our work helps visualize what has long been invisible or ignored,” noted Sossena Wood, assistant professor of biomedical engineering at Carnegie Mellon. “This research validates patients’ experiences with neuroscientific evidence. It shows that the pain they feel is real, measurable, and rooted in brain function in vital pain receptors.”
The research has already translated into a practical tool, with Painimation being adopted by sickle cell communities across the country to aid clinicians in interpreting patients’ pain experiences. Wood’s team is exploring the potential of virtual reality and wearable sensors to further modulate pain perception and potentially reduce it through targeted brain stimulation.
This innovative approach offers a promising path toward more effective pain management and improved communication, ultimately enhancing the quality of life for individuals living with sickle cell disease.
More information: Joel Dzidzorvi Kwame Disu et al, Nociceptive and neuropathic pain descriptors in adults with sickle cell disease are associated with overlap activity in the default, salience and somatosensory networks, The Journal of Pain (2025). DOI: 10.1016/j.jpain.2025.105532
