Dr. Charles Jonassaint of the University of Pittsburgh.

As a patient-centered research network, PaTH is proud to participate in the CaRISMA study, a project that has emphasized community from its beginnings. The CaRISMA (Cognitive Behavioral Therapy and Real-Time Pain Management Intervention for Sickle Cell via Mobile Applications) study is a clinical trial led by Dr. Charles Jonassaint at the University of Pittsburgh that is focused on sickle cell disease (SCD) and finding new ways for patients with SCD to manage their chronic pain. In addition to the University of Pittsburgh, Ohio State University (with site investigator Dr. Payal Desai) and Johns Hopkins University (with site investigator Dr. Pat Carroll) are participating sites. There are several sites outside of PaTH participating as well, including another PCORnet site, Duke University.

Sickle cell patients report that stress is the number one trigger for their chronic pain aside from weather. This is why CaRISMA focuses on managing stress with the hope that this will reduce daily pain. Participants use an app on their phone to access a health coach, record their pain levels and mood, and text with a chatbot that recommends videos to the participants. These videos feature community members who also have sickle cell disease.

Participants are randomly assigned to one of two trial groups: cognitive behavioral therapy or sickle cell education. Those who receive therapy are taught stress management tactics and how to modify stressful thought patterns. Those in the education group complete training through Sickle Cell 101, a worldwide sickle cell education platform, with hopes to reduce stress through knowledge.

Importantly, the participants are also given access to an online support group of others with SCD, meaning that CaRISMA has been deeply invested in community from its inception and will continue to build connections and support for patients even after the study ends. We asked Dr. Jonassaint, a clinical health psychologist with expertise in chronic disease self-management, about his work with CaRISMA; he said, “This is the type of study that you dream of doing as a clinical researcher. A study that is both providing data that will help drive clinical practice, while also providing a valuable, evidence-based service to the community, the patients that have taken part in the trial. And the best part is that the community is leading this. They are telling us what they want and need. We are just listening and following their direction.”

Last month, CaRISMA surpassed its enrollment target, which was a huge accomplishment. The research team plans to share results in 2023. For more information, visit the CaRISMA website or the study page on the PaTH Network website. L – m

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