Abstract

This core project will provide support for state-of-the-art clinical care for patients at St. Christopher's Hospital for Children, Thomas Jefferson University Hospital, and Kosair Children's Hospital as part of the Marian Anderson Comprehensive Sickle Cell Center. It will also support the patients and staff participating in the Inter-Center cooperative clinical trials. The focus of this core will be to expand the educational role of the Center in Philadelphia, PA., and in Louisville, KY. Patients and their families will have access to comprehensive sickle cell-related medical, psychological and social services provided by Center and Core staff. Core staff will also provide innovative sickle cell-related educational programs for patients and their families, and for nurses and other healthcare professionals. Core staff will coordinate these activities in collaboration with the Center's new family support program, transition program, parent group, and local and regional community agencies. Patient Support 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).

  Funding Agency

Agency
National Institute of Health (NIH)
Institute
National Heart, Lung, and Blood Institute (NHLBI)
Type
Specialized Center--Cooperative Agreements (U54)
Project #
5U54HL070585-05
Application #
7409576
Study Section
Special Emphasis Panel (ZHL1)
Project Start
2007-04-01
Project End
2008-03-31
Budget Start
2007-04-01
Budget End
2008-03-31
Support Year
5
Fiscal Year
2007
Total Cost
$36,827
Indirect Cost

  Institution

Name
Thomas Jefferson University
Department
Type
DUNS #
053284659
City
Philadelphia
State
PA
Country
United States
Zip Code
19107

  Publications

Goligher, Ewan C; Ely, E Wesley; Sulmasy, Daniel P et al. (2017) Physician-Assisted Suicide and Euthanasia in the ICU: A Dialogue on Core Ethical Issues. Crit Care Med 45:149-155
Daniel, Lauren C; Li, Yimei; Smith, Kelsey et al. (2015) Lessons Learned From a Randomized Controlled Trial of a Family-Based Intervention to Promote School Functioning for School-Age Children With Sickle Cell Disease. J Pediatr Psychol 40:1085-94
Robinson, M Renee; Daniel, Lauren C; O'Hara, Emily A et al. (2014) Insurance status as a sociodemographic risk factor for functional outcomes and health-related quality of life among youth with sickle cell disease. J Pediatr Hematol Oncol 36:51-6
Barakat, Lamia P; Daniel, Lauren C; Smith, Kelsey et al. (2014) Parental problem-solving abilities and the association of sickle cell disease complications with health-related quality of life for school-age children. J Clin Psychol Med Settings 21:56-65
Dampier, Carlton; Ely, Beth; Brodecki, Darcy et al. (2014) Pain characteristics and age-related pain trajectories in infants and young children with sickle cell disease. Pediatr Blood Cancer 61:291-6
Smith, Kelsey E; Patterson, Chavis A; Szabo, Margo M et al. (2013) Predictors of Academic Achievement for School Age Children with Sickle Cell Disease. Adv Sch Ment Health Promot 6:5-20
McQuaid, Elizabeth L; Barakat, Lamia P (2012) Introduction to special section: advancing research on the intersection of families, culture, and health outcomes. J Pediatr Psychol 37:827-31
Setty, B N Yamaja; Key, Nigel S; Rao, A Koneti et al. (2012) Tissue factor-positive monocytes in children with sickle cell disease: correlation with biomarkers of haemolysis. Br J Haematol 157:370-80
Dampier, Carlton; LeBeau, Petra; Rhee, Seungshin et al. (2011) Health-related quality of life in adults with sickle cell disease (SCD): a report from the comprehensive sickle cell centers clinical trial consortium. Am J Hematol 86:203-5
Quinn, Charles T; Stuart, Marie J; Kesler, Karen et al. (2011) Tapered oral dexamethasone for the acute chest syndrome of sickle cell disease. Br J Haematol 155:263-7

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