Shortly after presenting data from her study on self-efficacy and stigma in adults with sickle cell disease (SCD) at the American Society of Hematology (ASH) Annual Meeting and Exposition, Stephanie Guarino, MD, MSHP, Nemours Dupont Hospital For Children, Center for Special Health Care Needs/Institute on Research in Equity and Community Health, Christiana Care, shared results from another study.
Guarino and a team of investigators aimed to expand the content in the PhenX toolkit to include practices for SCD-related pain. The National Heart, Lung, and Blood Institute (NHLBI) launched the PhenX (consensus measures for Phenotypes and eXposures) Measures for Sickle Cell Disease Research Project in 2014 to establish a framework for data sharing across different SCD research projects. Source: MDMag
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