Language: English
Language: English
Published: 10/2023
International Clinical Trials Day is observed on May 20th every year to mark the anniversary of the first randomized clinical study, which was conducted by James Lind in 1747. On Saturday, May 20, 2023, take a moment to celebrate the accomplishments of clinical research professionals in the sickle cell disease (SCD) field and learn about clinical research advancements made across the globe. Listen to this episode of the American Society of Hematology’s (ASH) podcast, Bringing Sickle Cell Disease to Life, entitled, “Finding a Purpose Through Sickle Cell Disease Research” to learn from experts Drs. Wally Smith and Betty Pace about their paths to conducting clinical research and training opportunities available to sickle cell researchers today.
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Several years ago, the American Society of Hematology (ASH) released a position statement on sickle cell trait (SCT). The statement expressed that it is medically inaccurate to claim sickle cell crisis as the cause of death based solely on the presence of sickled cells at autopsy. SCT rarely causes sudden death without the presence of another inflicted trauma. Well-controlled studies on collapse due to exertion have produced no evidence to prove SCT as a cause of death. Studies that have cited SCT as a sole cause of death or major contributor should be viewed with skepticism. Learn more here.
The Global Action Network for Sickle Cell and Other Inherited Blood Disorders (GANSID) showcased member organizations and their activities for World Sickle Cell Day 2023. GANSID’s toolkit compiled graphics that can continue to be used to spread awareness and to start community conversations about sickle cell. Learn more here.
This study aims to test whether a new medication can boost energy levels for adults with SCD. Study participants will be given either the study drug or a “sugar pill” not knowing which they are receiving and will report their activity levels and hours of sleep. The study is paid for by a drug company and will be conducted by university scientists at health care clinics that treat people with SCD. If the study drug is found to work it could improve the health and well-being of those living with SCD.”
Being tired is a common symptom of SCD and can interfere with daily living. Existing drugs to boost energy might not be safe for persons with SCD and might not mix well with other drugs being taken. This new drug has been developed to get around those concerns but needs to be tested for safety and usefulness.
Persons with SCD between the ages of 18 and 45 will be chosen for the study based on the medications they are currently taking and their overall health status. They will receive either the study drug or a sugar pill over a 6-week period and will be given a log book to record their daily physical activities (for example, walking, shopping) as well as their hours of sleep. Early studies have shown no bad side effects of this drug but such effects will be followed
This study is paid for by XYZ Company. The University of ABC is partnering with the DEF Clinic and the BBB Community Center to conduct the study.
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