Improving Psychosocial and Cognitive Outcomes in Sickle Cell Disease
The high levels of depression, loneliness and impairment in the quality of life for persons living with Sickle Cell Disease (SCD) have been repeatedly captured in studies conducted over the last few years. These psychological and social factors contribute substantially to the physical burden of the disease, manifested in increased pain crises, which affect not only patients but also their families, who often face obstacles in finding psychological support especially in challenged social environments. Current predictive models based on pathological/physiological mechanisms are unable to explain all variation in Sickle Cell Disease (SCD) outcomes. Studies among adolescents with SCD reveal that patients with better disease knowledge adopt a more positive outlook on their health. The converse is true for those with less information, many of whom are teenagers from difficult social backgrounds, among whom there is a high prevalence of risky behaviours. This programme seeks to conduct studies that improve our understanding of the psychosocial determinants and outcomes in Sickle Cell Disease, as well as disparities that may be present across Sickle Cell Disease populations.
Projects
- Gene Transfer for Patients with Sickle Cell Disease Using a Gamma Globin Lentivirus Vector: An Open Label Phase I/II Pilot Study
- A Double-blind, Randomized, Placebo-controlled, Multicenter Study of GBT440 Administered Orally to Patients with Sickle Cell Disease
- Cochrane Review: Interventions for treating neuropathic pain in people with sickle cell disease
- EXpanding Treatment for Existing Neurological Disease (EXTEND)
