What the trial was testing
The trial enrolled 33 patients with sickle cell disease. The study was sponsored by Children's Hospital Medical Center, Cincinnati and tracked outcomes across the full group of patients who matched the trial's eligibility profile.
Researchers followed patients through treatment and into recovery, tracking the outcomes that mattered most for the disease being studied.
What the results showed
94% of patients with sickle cell disease had reduced exercise capacity on testing.
Pediatric blood & cancer · 2018 · NCT02410811
These findings — that almost all sickle cell patients in the study showed lower-than-normal ability to exercise — were published in the Pediatric blood & cancer and represent the headline result of the study.
Researchers tracked outcomes across 33 patients enrolled in the trial. The result was consistent enough across the group that the team felt confident reporting it.
What this means for patients
For patients with sickle cell disease, this result changes the calculus on what to ask their care team about. Whether it changes day-to-day care depends on factors like disease subtype, prior treatments, and where the patient is in their care journey.
What you can do now
This was an early-stage study exploring why people with sickle cell disease often struggle with exercise. The findings suggest heart function testing might help identify who needs closer monitoring. Talk to your doctor if you experience unusual fatigue or shortness breath during activity.
Eligibility for the treatments mentioned above depends on specific test results and clinical history. Bring this summary, the trial name, and your most recent labs or pathology report to your next visit.
Open sickle cell disease trials
Acceptance and Commitment Therapy for Adolescents and Young Adults With Sickle Cell Disease
The current study seeks to build on previous research that demonstrates the efficacy of Acceptance and Commitment Therapy in combating stigma by investigating the feasibility and acceptability of a protocol to support Black adolescents and young adults in coping with race related stress. The study will consist of a small, purposeful, non-randomized sample (N = 30) of clients enrolled into a 10-session Acceptance and Commitment Therapy group. The group will be offered as part of regular clinical care at the Division of Adolescent and Young Adult Medicine. Three consecutive groups will be run with approximately 8-10 participants in each group over the next year.
Adapting the FACETS Program to Sickle Cell Disease
Adaptation of a fatigue management program combining the principles of cognitive-behavioral therapy and energy conservation strategies (FACETS program) for a population of adult patients with sickle cell disease (Drépa-FACETS program).