CORE--CLINICAL

Thomas Jefferson University, Philadelphia PA

Investigators

Linked publications & trials

Abstract

DESCRIPTION (provided by applicant): This core project will provide support for state-of-the-art clinical care for patients at St. Christopher's Hospital for Children (SCHC), Thomas Jefferson University Hospital (TJU), and Kosair Children's Hospital (KCH) as part of the Marian Anderson Comprehensive Sickle Cell Center. It will also support the staff necessary to conduct the Inter-Center cooperative clinical trials. Core staff will identify patients eligible for studies from the pediatric and adult populations at the various Center sites, develop and implement strategies to foster patient enrollment and to minimize patient dropout in clinical trials, and perform appropriate data collection, data entry, and clinical follow-up in coordination with the Statistical and Data Management Center. Core staff at St. Christopher's Hospital will coordinate and supervise these activities with the Clinical Cores at Thomas Jefferson University Hospital and at the Kosair Children's Hospital (University of Louisville). The combined pediatric SCD population of the two pediatric programs is over 500 patients, 289 of whom have SCD-SS. The current adult program at TJU in Philadelphia has 168 patients, of whom I03 have SCD-SS. Additional pediatric and adult patients are anticipated from the Kentucky program as they begin education and outreach activities with the assistance of Dr. Dampier. Proposed activities at SCHC include further development, implementation, and dissemination of consensus regional clinical SCD practice guidelines and clinical pathways, and a SCD childrens care book for parents of SCD patients. Additional activities at KCH will include community outreach and education activity to recruit new patients and to enhance the quality of care for SCD individuals in the area. The TJU program will continue educational activities on behalf of adult patients, and collaborate with the staff at SCHC and community agencies to develop a comprehensive transition strategy and program for local adolescents and young adults with SCD.