Dr. Oswaldo Castro is Professor Emeritus of Medicine at the Howard University College of Medicine in Washington, DC, and also a consultant to the Sickle Cell Clinic at the National Institutes of Health in Bethesda, MD, United States of America. He received his medical school training at Albert-Ludwigs University in Freiburg, Germany, and his hematology specialty training at Yale University, New Haven, CT. Dr. Castro is certified in internal medicine and in hematology by the American Board of Internal Medicine. He joined the Howard University faculty in 1974 as Deputy Director of the Center for Sickle Cell Disease. From 1990 to 2006, he was the Center's Director. He now serves as a special advisor to the Center. Dr. Castro has had a life-long interest in the clinical and research aspects of sickle cell disease and has published over 100 scientific articles dealing primarily with complications of this disorder. Interests: Pulmonary hypertension, transfusion medicine and iron deficiency as they relate to sickle cell disease.   Representative Publications: Hospitalization for pain in patients with sickle cell disease treated with sildenafil for elevated TRV and low exercise capacity Hydroxyurea and acute painful crises in sickle cell anemia: effects on hospital length of stay and opioid utilization during hospitalization, outpatient acute care contacts, and at home Refining the value of secretory phospholipase A2 as a predictor of acute chest syndrome in sickle cell disease: results of a feasibility study (PROACTIVE) Relative systemic hypertension in patients with sickle cell disease is associated with risk of pulmonary hypertension and renal insufficiency Pathophysiology and treatment of pulmonary hypertension in sickle cell disease Risk factors for death in 632 patients with sickle cell disease in the United States and United Kingdom Clinical correlates of acute pulmonary events in children and adolescents with sickle cell disease Online profile

Regina Denise Crawford is an Assistant Professor of Medicine at Duke University School of Medicine. Education and Training: - Fellow In Hematology Oncology, Medicine, Ohio State University, 2004 - 2007 - Medical Resident, Medicine, University of Texas, Medical Branch at Galveston, 2000 - 2003 - M.D., Wright State University, 2000 Grants: - Transfusion Medicine and Hematology Representative Publications: Adults with sickle cell disease may perform cognitive tests as well as controls when processing speed is taken into account: a preliminary case-control study A 19-year-old man with sickle cell disease presenting with spinal infarction: a case report Kikuchi-Fugimoto's disease in sickle cell disease: report of 2 cases Neurocognitive testing and functioning in adults sickle cell disease Opioid management and dependency among adult patients with sickle cell disease Online profile

Dr. Telen is the Associate Professor of pathology at Duke University School of Medicine. She is also the member of the Duke Cancer Institute. Dr. Telen is recognized as an expert in the biochemistry and molecular genetics of blood group antigens and the pathophysiological mechanisms of vaso-occlusion in sickle cell disease. She is the Director of the Duke Comprehensive Sickle Cell Center. Dr. Telen's laboratory focuses on structure/function analysis of membrane proteins expressed by erythroid cells, as well as the role of these proteins in non-erythroid cells. Dr. Telen is also involved in a large multicenter study looking for genetic polymorphisms that affect clinical outcomes in sickle cell disease, as well as a multi-center study investigating the mechanisms and treatment of pulmonary hypertension in sickle cell disease.     Representative Publications: Alloimmunization in sickle cell disease: changing antibody specificities and association with chronic pain and decreased survival Factors associated with survival in a contemporary adult sickle cell disease cohort Meta-analysis of 2040 sickle cell anemia patients: BCL11A and HBS1L-MYB are the major modifiers of HbF in African Americans IMPROVE trial: a randomized controlled trial of patient-controlled analgesia for sickle cell painful episodes: rationale, design challenges, initial experience, and recommendations for future studies Opioid patient controlled analgesia use during the initial experience with the IMPROVE PCA trial: a phase III analgesic trial for hospitalized sickle cell patients with painful episodes Online profile

Dr. Cecelia Valrie is a developmental-health psychologist. Her research primarily focuses on adjustment in children and adolescents with sickle cell disease (SCD) and their families, focusing on pain, sleep, academic functioning, and health-related outcomes. She is currently conducting research on: (1) the temporal relationship between sleep and pain in children and adolescents with SCD, and (2) the influence of sleep, pain, and family functioning on academic and health-related outcomes in children and adolescents with SCD. Dr. Valrie also has research interests in the transition to adulthood for pediatric populations and the influence of socio-cultural factors on pediatric health outcomes. She is currently developing projects focusing on building resilience in children, adolescents, and young adults with a chronic illness to improve their long-term health and career outcomes, and understanding the influences of parental and family factors on preparation for transitioning to adulthood in pediatric population.   Representative Publications: Experiences of Pediatric Patients With Sickle Cell Disease in Rural Emergency Departments Risk and resilience factors for grade retention in youth with sickle cell disease The influence of maternal behaviors during childhood on self-efficacy in individuals with sickle cell disease Daily mood as a mediator or moderator of the pain-sleep relationship in children with sickle cell disease Optimism predicting daily pain medication use in adolescents with sickle cell disease Brief report: sleep in children with sickle cell disease: an analysis of daily diaries utilizing multilevel models Online profile

Dr. Minniti is Professor of Clinical Medicine and Pediatrics at Einstein College of Medicine. Additionally, she is Director of the Sickle Cell Center for Adults at Montefiore Medical Center, whose mission is to provide exceptional, seamless, comprehensive, compassionate and individualized care, education, counseling, and research for people living with sickle cell disease (SCD). Dr. Minniti is a clinical trial specialist and a translational researcher who believes that the best way to provide care for SCD patients is on a continuum, from birth to adulthood. Dr. Minniti's research focuses on understanding mechanisms that lead to end organ damage in order to identify early biomarkers and targeted therapies. Her interests have spanned from stroke to pulmonary hypertension and, most recently, leg ulcers as they represent a window into the vasculopathy in SCD. She aims to develop pathogenetically-based therapeutic approaches for preventing and treating SCD-related end organ damage.   Representative Publications: Prostacyclin-analog therapy in sickle cell pulmonary hypertension A retrospective review of acupuncture use for the treatment of pain in sickle cell disease patients: descriptive analysis from a single institution Effect of extended-release niacin on serum lipids and on endothelial function in adults with sickle cell anemia and low high-density lipoprotein cholesterol levels Efficacy and safety of deferasirox compared with deferoxamine in sickle cell disease: two-year results including pharmacokinetics and concomitant hydroxyurea IMPROVE trial: a randomized controlled trial of patient-controlled analgesia for sickle cell painful episodes: rationale, design challenges, initial experience, and recommendations for future studies Markers of severe vaso-occlusive painful episode frequency in children and adolescents with sickle cell anemia Opioid patient controlled analgesia use during the initial experience with the IMPROVE PCA trial: a phase III analgesic trial for hospitalized sickle cell patients with painful episodes   Online profile

John J. Strouse is currently working as Associate Professor of Medicine in the Department of Pediatrics at Duke University School of Medicine. He received his medical degree from the Johns Hopkins University School of Medicine and fellowship in Pediatric Hematology from Nci, National Institutes of Health. He also received his Ph.D in clinical investigation from the Johns Hopkins Bloomberg School of Public Health for a series of studies to identify predictors of cognitive function in children with sickle cell disease. Dr. John J. Strouse’s research has focused on the epidemiology, risk factors, and prevention of the pulmonary and central nervous system complications of sickle cell disease and includes retrospective and prospective cohort studies and clinical trials.  His other research interests include the application of large clinical, research, and administrative databases to the study of rare hematological diseases and interventions to improve the quality of and access to care for sickle cell disease. Dr. Strouse has served on the American Society of Hematology Sickle Cell Taskforce and Sickle Cell Pain Guideline Panel and is co-chair of the American Society of Hematology Healthcare Professional Education and Training Work Group.   Education and Training - Fellow In Pediatric Hematology, Nci, National Institutes of Health, 2001 - 2004 - Fellow In Pediatric Hematology/Oncology, Johns Hopkins University, 2001 - 2004 - Fellow In Hematology, Nhlbi, National Institutes of Health, 2000 - 2004 - Combined Internal Medicine/Pediatrics Residency, University of Rochester, 1996 - 2000 - Ph.D., Johns Hopkins University, 2009 - M.D., Johns Hopkins University School of Medicine, 1996   Grants: - Sickle Cell Treatment Demonstration     Representative Publications: Increased prevalence of potential right-to-left shunting in children with sickle cell anaemia and stroke Improving Quality of Care for Sickle Cell Patients in the Pediatric Emergency Department Randomized controlled trial of sildenafil for preventing recurrent ischemic priapism in sickle cell disease Respiratory syncytial virus and seasonal influenza cause similar illnesses in children with sickle cell disease Secondhand smoke is associated with more frequent hospitalizations in children with sickle cell disease Perceived discrimination, patient trust, and adherence to medical recommendations among persons with sickle cell disease Online profile

Dr. Lewis Hsu is a pediatric hematologist dedicated to finding cures for sickle cell disease, and improving treatment and education until cures can be found.  He joined UIC as pediatric director of the Sickle Cell Center and Professor of Pediatrics in July 2011. His clinical and translational research experience include multicenter landmark clinical trials of sickle cell stroke prevention and bone marrow transplantation, and contributing to understanding of inflammation and nitric oxide in mouse models of sickle cell disease.  He has published over 70 peer-reviewed papers, mentored numerous physicians and graduate students, and contributed to 4 sickle cell websites devoted to patient education.   Representative Publications: Community Health Workers as Support for Sickle Cell Care Adverse Reactions to Pneumococcal Vaccine in Pediatric and Adolescent Patients with Sickle Cell Disease IMPROVE trial: a randomized controlled trial of patient-controlled analgesia for sickle cell painful episodes: rationale, design challenges, initial experience, and recommendations for future studies Nitric oxide for inhalation in the acute treatment of sickle cell pain crisis: a randomized controlled trial Tapered oral dexamethasone for the acute chest syndrome of sickle cell disease Enhanced pulmonary and systemic response to endotoxin in transgenic sickle mice Hemolysis in sickle cell mice causes pulmonary hypertension due to global impairment in nitric oxide bioavailability Pulmonary, gonadal, and central nervous system status after bone marrow transplantation for sickle cell disease Evidence-based interventions are necessary but not sufficient for achieving outcomes in each setting in a complex world: empowerment evaluation, getting to outcomes, and demonstrating accountability Online profile

Dr. Crosby works in Cincinnati, Ohio and specializes in Psychology. Her research involves community-engaged research, self-management, quality improvement, sickle cell disease, health disparities, patient centered outcomes, shared decision making, health services research.   Clinical Interest: - Adolescents and young adults; sickle cell disease; transition to adult care; chronic pain; migraines; diversity and inclusion   Research Interest: - Community-engaged research; self-management; quality improvement; sickle cell disease; health disparities; patient centered outcomes; shared decision making; health services research     Representative Publications: Erratum to: Patient Perspectives on Gene Transfer Therapy for Sickle Cell Disease Patient Perspectives on Gene Transfer Therapy for Sickle Cell Disease Improving Sickle Cell Transitions of Care Through Health Information Technology Systematic and Meta-Analytic Review: Medication Adherence Among Pediatric Patients With Sickle Cell Disease Medication adherence among pediatric patients with sickle cell disease: a systematic review Online profile

Dr. Punam Malik is a pediatric hematologist-oncologist in Cincinnati, Ohio and is affiliated with Cincinnati Children's Hospital Medical Center. She received her medical degree from Lady Hardinge Medical College and has been in practice for more than 20 years.   Representative Publications: Placenta growth factor mediated gene regulation in sickle cell disease Erratum to: Patient Perspectives on Gene Transfer Therapy for Sickle Cell Disease Association between diffuse myocardial fibrosis and diastolic dysfunction in sickle cell anemia Losartan for the nephropathy of sickle cell anemia: A phase-2, multicenter trial Cardiomyopathy With Restrictive Physiology in Sickle Cell Disease High levels of placenta growth factor in sickle cell disease promote pulmonary hypertension Online profile

Dr. Winfred Wang is a pediatric hematologist-oncologist in Memphis, Tennessee and is affiliated with multiple hospitals in the area, including Methodist Hospitals of Memphis and St. Jude Children's Research Hospital. He received his medical degree from University of Chicago Pritzker School of Medicine and has been in practice for more than 20 years. Research Interests: - Sickle cell disease and other hemoglobinopathies - Aplastic anemia and other disorders of bone marrow failure - Neutropenia and granulocyte colony-stimulating factor (G-CSF)   Representative Publications: Clinic Attendance of Youth With Sickle Cell Disease on Hydroxyurea Treatment Hydroxycarbamide treatment and brain MRI/MRA findings in children with sickle cell anaemia Addressing challenges of clinical trials in acute pain: The Pain Management of Vaso-occlusive Crisis in Children and Young Adults with Sickle Cell Disease Study Silent cerebral infarcts in very young children with sickle cell anaemia are associated with a higher risk of stroke Hydroxyurea and growth in young children with sickle cell disease Hydroxycarbamide in very young children with sickle-cell anaemia: a multicentre, randomised, controlled trial (BABY HUG) Tapered oral dexamethasone for the acute chest syndrome of sickle cell disease Online profile