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Increased knowledge about an illness can increase self-management among those afflicted. In order to facilitate people with sickle cell disease living a longer and healthier life, they should be taught to manage their illness.An adolescent with a chronic illness has many unique challenges, in addition to maneuvering the turbulent adolescence period itself. It has been that better knowledge and more positive perceptions of their illness equate not only to better control of their illness but also better quality of life.Studies have also shown the benefits of self-management: when patients are responsible for managing their own illness, their clinical outcomes and quality of life improve and they become less dependent on health care services. This study aims to examine if knowledge, and any changes in knowledge, will each have any association with Quality of Life (QOL) and their perceptions of their illness (IP). It will investigate the effects of an educational booklet, as well as an intervention including the educational booklet with formal counselling on their knowledge, QOL and IPs.

More information: clinicaltrials.gov, ITHANET Clinical Trials

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It is believed that when androgen (testosterone) levels are below normal that there is a disturbance of normal bodily functioning that is associated with priapism in some men. Conversely, it is believed that testosterone replacement will improve the condition of priapism when the testosterone levels are brought to normal. In turn, this will also improve psychological well being in men with sickle cell disease.

This clinical trial will evaluate the efficacy of testosterone replacement therapy on the frequency of recurrent priapism in patients with SCD and will test the sub-hypothesis that T replacement to achieve serum T concentrations at a target range reduces recurrent priapism.

More information: clinicaltrials.gov, ITHANET Clinical Trials

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The purpose of this study is to determine whether giving abciximab (ReoPro) to children with sickle cell disease who are hospitalized for acute pain crisis will improve their pain and shorten the time spent in the hospital, when compared with standard supportive care. The study will start in September 2013 and it is expected to be completed in September 2015.

More information: clinicaltrials.gov, ITHANET Clinical Trials

sangart

Sickle Cell Disease is caused by an inherited hemoglobin disorder. Healthy red blood cells are discoid and can deform and move through small blood vessels to carry oxygen to all parts of the body. In Sickle Cell disease, as red blood cells circulate and oxygen is released in the circulatory system, the deoxygenated abnormal Hemoglobin S can begin to polymerize. When this occurs, the red blood cells can become sticky and elongated. These sickled red blood cells are less flexible and will obstruct small blood vessels and block normal red blood cells from traveling through the circulatory system, which limits oxygen delivery to tissues and organs. This is known as a "sickling crisis" or "vaso-occlusive crisis" and is the leading cause of hospitalization in patients with Sickle Cell disease.

Patients suffering from a sickle crisis experience severe pain and are at risk of stroke, heart attack or even death. Current therapy is limited to hydration and symptomatic pain relief. The administration of MP4CO as an adjunct treatment to standard therapy may alleviate pain associated with a sickle cell crisis and potentially reduce the severity and duration of a crisis. This could shorten the time in hospital and potentially improve the quality of life for patients with sickle cell anemia.

More information: clinicaltrials.gov, ITHANET Clinical Trials