PCORI Board approves $18 million for research on sickle cell disease | oneSCDvoice
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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.

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