More than 100,000 people in the United States have sickle cell disease—a group of inherited red blood cell disorders that affect blood flow and the body’s use of oxygen.

Sickle cell disease causes red blood cells to become crescent, or sickle-shaped, instead of round and disc-like. Sickle-shaped cells do not move through the body as easily as normal cells and can lead to a variety of health conditions including stroke, lung problems, and intense, debilitating pain.

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The PCORI-funded CaRISMA Study is comparing two strategies to help patients with sickle cell disease manage pain. More than 300 adults with sickle cell disease and chronic pain nationwide have consented to enroll into the study. One group of patients has been assigned by chance to receive cognitive behavioral therapy and another group is receiving pain education about sickle cell disease and its symptoms. Both groups also have access to health coaches.

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A poster for the PCORI-funded CaRISMA Study, focusing on alternative ways to manage sickle cell pain; it outlines how patients can take part in an online Facebook group to discuss issues related to SCD with other patients.
A poster for the CaRISMA Study outlines support and resources available to patients through study enrollment. (click to enlarge)

Charles Jonassaint, PhD, MHS, one of the trial’s principal investigators, notes there has been considerable interest from patients, family members, caregivers, clinicians, and the sickle cell disease advocacy community regarding the study.

“We have been hearing from our clinical and community partners that the patients engaged in the trial are reporting a benefit, with some patients even stating that they require less opioid pain medication because of the study,” Jonassaint says. He adds that the health coaching component of the project has been a study highlight and is already meeting a critical need.

Jonassaint and his team have been particularly surprised by the number of study participants reporting serious mental health concerns.

“About 18 percent of the enrolled patients have reported thinking about death or hurting themselves. We believe this is partly due to the pandemic and also the challenge of managing a chronic condition in the midst of racial and economic tensions,” explains Jonassaint.

Fortunately, patients enrolled in the study have felt emotionally supported by CaRISMA health coaches and other team members. “Many of our participants have said that having someone to talk to has already had a significant impact on their quality of life,” Jonassaint notes.

Study enrollment remains underway, and the trial is expected to be completed in 2024.

2022 PCORI Annual Meeting

Join us virtually on October 26-27 as we explore a variety of topics, including rare diseases and telehealth. Programming includes a keynote by Ashley Valentine, MRes, a PCORI Advisory Panel member and President of Sick Cells, an organization she co-founded with her late brother Marqus, who was diagnosed with sickle cell disease at six months old. In her address, Valentine will share her experience in the rare disease community as a patient advocate and how it shaped her approach to patient engagement in research and patient community involvement.

Registration is free!

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