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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 America – Mobile Chapter, Inc.The Sickle Cell Disease Association of A...
people & placesMaureen Okam Achebe, MD, MPHDr. Maureen M. Okam studied medicine at ...
people & placesLakiea Bailey, PhDDr. Lakiea Bailey is a sickle cell disea...
education & researchSpark Good Care GuideAs a person living with or caring for so...
news & eventsGlobal Sickle Cell Disease Treatment Market 2019–2023| Evolving Opportunities with ADDMEDICA and Bristol-Myers Squ...The global sickle cell disease treatment...
education & researchDiving into the genetics of Sickle cell diseaseIn recent years, genetics has become a h...
people & placesSickle Cell Disease Program at Arkansas Children’sArkansas Children's is the only hospital...
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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.