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PCORI Board Approves $18 Million for Research on Sickle Cell Disease
The Patient-Centered Outcomes Research Institute (PCORI) Board of Governors today approved about $18 million to fund two studies comparing different ways to manage the transition of people with sickle cell disease from pediatric to adult care.
Although children with sickle cell disease generally receive the care they need to manage their condition, the transition to adult care can be hazardous. Many primary care clinicians who treat adults are unfamiliar with caring for this rare condition, and patients can find it challenging to access care across specialists. Losing a source of care, such as pediatric specialty care, decreases the likelihood that young adults with sickle cell disease will receive preventive care and screening visits, and it increases the chance they will seek emergency department care when painful symptoms flare.
Community CenterSickle Cell Disease Association of North TexasSCDA Tarrant is committed to providing m...
education & researchFamily functioning, medical self-management, and health outcomes among school-aged children with sickle cell disease...BACKGROUND: Informed by the Pediatric S...
people & placesJon Mark Hirshon, MDJon Mark Hirshon, MD, PhD, MPH, FACEP, F...
people & placesCecelia R. Valrie, PhDDr. Cecelia Valrie is a developmental-he...
education & researchAn analysis of inpatient pediatric sickle cell disease: Incidence, costs, and outcomesOBJECTIVE: To identify characteristics ...
people & placesUC Davis Health, Department of PediatricsThe Section of Pediatric Hematology/Onco...
people & placesThe Regional Comprehensive Sickle Cell Center at Robert Wood Johnson Medical SchoolThe Division of Hematology provides spec...
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This platform is made possible through a partnership with the Sickle Cell Disease Association of America, Inc. (SCDAA) and its member organizations. SCDAA's mission is to advocate for people affected by sickle cell conditions and empower community-based organizations to maximize quality of life and raise public consciousness while advancing the search for a universal cure.