Public Health Webinar Series on Blood Disorders

February 23, 2023

Presenter:
Christine L. Kempton, MD, MSc

Professor, Department of Hematology and Medical Oncology & Department of Pediatrics, Emory University School of Medicine
Director, Hemophilia of Georgia Center for Bleeding & Clotting Disorders of Emory
Vice Chair for Faculty Development, Department of Hematology & Medical Oncology, Emory University School of Medicine

February 23, 2023

Presenter:
“Bobby” Duc Tran, MD, MSc
Assistant Professor, Department of Hematology & Medical Oncology
Hemophilia of Georgia Center for Bleeding & Clotting Disorders, Emory University School of Medicine

From Zoomer to Boomer: Aging with Hemophilia

Through advances in treatment, people with hemophilia are enjoying longer lives. Aging can bring new health concerns such as declining physical and cognitive function, bone loss, and cardiovascular disease. Aging with hemophilia presents unique challenges that require attention by hemophilia providers and treatment centers to successfully support people with hemophilia as they transition through later stages of life.

In this presentation, Dr. Kempton will discuss comorbidities that are either unique to or more common in people with hemophilia, as well as common challenges of aging that may require special attention in the hemophilia population.

December 1, 2022

Presenter:
Kaveh Shabtaie, MPH
Regional Administrator, Northern States Region
Great Lakes Hemophilia Foundation

Presenter
Susan Lattimore, RN, GCPH
Regional Director, Mountain States Region
Oregon Health & Science University

Moderator:
Vanessa R. Byams, DrPH, MPH
Lead Health Scientist, Division of Blood Disorders
National Center on Birth Defects and Developmental Disabilities
U.S. Centers for Disease Control & Prevention

What Patients are Saying about Hemophilia Treatment Center Care, Teams, and Services: Third National Patient Satisfaction Survey

In 2021, the United States Hemophilia Treatment Center Network conducted the third U.S. HTC Patient Satisfaction Survey to gather direct patient and family input on satisfaction with their HTC healthcare team and services. The network received a robust response to the survey.

In this webinar, Mr. Shabtaie and Ms. Lattimore describe key results from the third survey, compare results from the previous two surveys, and highlight how satisfaction differs across patient populations.

November 10, 2022

Presenter:
Ayca Erkin-Cakmak, MD, MPH
Assistant Professor of Pediatrics
Division of Pediatric Endocrinology
University of California San Francisco

Moderator:
Tariq Ahmad,MD, FAAP
Professor, UCSF Benioff Children’s Hospital

Transfusion-Related Endocrinopathies in Thalassemia

Iron chelation therapy to sustain near normal pretransfusion hemoglobin concentrations has significantly changed the course of thalassemia. Introduction of oral chelators and imaging methods to monitor iron overload transformed thalassemia from a rapidly fatal disease of childhood to a chronic illness compatible with a prolonged life expectancy. However, we still have very little knowledge about the current prevalence of various endocrinopathies among patients with thalassemia and its impact on growth and development, especially with availability of oral chelators and better imaging for non-invasive iron assessment.

In this presentation, Dr. Ayca Erkin-Cakmak reviews factors that play a role in normal growth and development of children to better understand the alteration in these mechanisms for patients with thalassemia. Understanding these dynamics will inform screening guidelines and improve the care provided to patients with thalassemia as we explore future directions to decrease the morbidity during adulthood and improve overall quality of life.

World Thrombosis Day 2022 Global Webinar
How to Support VTE Risk Assessment Across Global Healthcare Systems
October 12, 2022

Co-hosted by the ISTH World Thrombosis Day Campaign and the Division of Blood Disorders at the Centers for Disease Control and Prevention

Prof. Beverley Hunt, MD, OBE
King’s College
London, England

Prof. Claire McLintock, MD, FRACP, FRCPA, ONZM
National Women’s Health
Auckland City Hospital
Auckland, New Zealand

Fionnuala Ní Áinle, MD, PhD
Mater Misericordiae University Hospital and Rotunda Hospital
Dublin, Ireland

Alexander (Ander) Cohen, MBBS, MSc, MD, FRACP, FESC
King’s College
London, England

Prof. Stefano Barco, MD, PhD
Clinic of Angiology, University Hospital
Zurich, Switzerland

Prof. Jenny Curnow, MBBS, FRACP, FRCPA, PhD
Westmead Hospital
Sydney, Australia

September 22, 2022

Presenter:
Allison E. Burnett, PharmD, PhC, CACP
President, Anticoagulation Forum
Antithrombosis Stewardship Pharmacist
University of New Mexico Hospital
Associate Adjunct Clinical Professor
University of New Mexico College of Pharmacy
Albuquerque, New Mexico

Moderator:
Caroline Cromwell, MD
Assistant Professor of Medicine
Icahn School of Medicine at Mount Sinai
Medical Director, Thrombosis Services
Program, Mount Sinai Health System
New York, New York

Anticoagulation Stewardship: Optimizing Treatment for Venous Thromboembolism Across the Continuum of Care

In this webinar, Dr. Burnett defines anticoagulation stewardship and describes practice-level initiatives and national-level momentum behind these types of programs. She also discusses the role of pharmacists within the multidisciplinary team to promote anticoagulation stewardship for VTE patients throughout the continuum of care. Finally, she summarizes relevant clinical resources to aid clinicians in optimizing the care of VTE patients.

June 2, 2022

Presenter:
M.A. Bender, MD, PhD
Director, Odessa Brown Comprehensive
Sickle Cell Clinic
Seattle Children’s Hospital
Seattle, Washington

Presenter:
Patrick Hopkins, BS
Former Chief, Missouri State
Newborn Screening Laboratory
Chair, Association of Public
Health Laboratories’ (APHL)
Hemoglobinopathy Workgroup
Jefferson City, Missouri

Moderator:
Kathryn Hassell, MD
Director, Hemoglobinopathies
Newborn Screening Follow-up
Program, Colorado and Wyoming
Director, Colorado Sickle Cell
Treatment and Research Center
University of Colorado Medicine
Aurora, Colorado

Newborn Screening for Thalassemia in the United States: Why, How, and What You Need to Know

Newborn screening is a state-based public health system that screens all newborn infants to identify congenital disorders with major impact before age five. These disorders may cause morbidity, disability, or death if not detected and treated promptly and appropriately.

In this webinar, Dr. Bender and Mr. Hopkins will review the clinical perspective as well as the basis for thalassemia newborn screening and discuss, with examples, how this is detected and quantified by screening methodologies used across the country. They will also review key points for interpreting thalassemia newborn screening results.

March 24, 2022

Presenter:
Aaron M. Wendelboe, PhD
Edward E. and Helen T. Bartlett Chair in Public Health
Professor, Department of Biostatistics and Epidemiology
University of Oklahoma Health Sciences Center

Presenter:
Thomas Lee Ortel, MD, PhD
Chief, Division of Hematology
Professor of Medicine and Pathology
Member of the Duke Cancer Institute
Duke University School of Medicine

Moderator:
Karon Abe, PhD
Captain, US Public Health Service
Chief, Epidemiology & Surveillance Branch
Division of Blood Disorders
National Center on Birth Defects and Developmental Disabilities

Conducting Surveillance for Venous Thromboembolism Using Traditional and Novel Methods

In this webinar, Drs. Wendelboe and Ortel describe how novel methods, such as natural language processing, might be incorporated into surveillance systems for venous thromboembolism. This work is part of a larger collaborative project between the U.S. Centers for Disease Control and Prevention, the University of Oklahoma, and Duke University.

November 18, 2021

Presenter:
John Wood, MD, PhD 
Director, Cardiovascular Magnetic Resonance Imaging
Professor of Pediatrics and Radiology at the Keck School of Medicine, University of Southern California
Los Angeles, California

Moderator:
Gregory Kurio, MD
Associate Clinical Professor
Department of Pediatrics UCSF Benioff Children’s Hospitals
San Francisco, California

The Heart in Thalassemia

In this presentation, Dr. Wood discusses the three most common cardiovascular complications in thalassemia: myocardial iron overload, pulmonary hypertension, and accelerated cardiovascular aging. He will cover the biology of iron metabolism and its derangements by transfusion therapy, the monitoring of iron overload by MRI, and the prevention and treatment of iron cardiomyopathy. He also discusses the pathophysiology of pulmonary hypertension, the critical role of the spleen in preventing disease, screening for increased pulmonary artery pressures, and the management of established disease. Lastly, he examines the consequences of our successes in managing iron cardiomyopathy. The survival of thalassemia patients to middle age and beyond has revealed a phenotype of accelerated vascular aging, characterized by atrial arrhythmias and heart failure with preserved ejection fraction. Taken together, the cardiac complications in thalassemia represent a formidable clinical challenge; however, our improved understanding of the underlying pathophysiology provides insights in improved preventive measures.

October 12, 2021

Claire McLintock, MD, FRACP, FRCPA, ONZM (moderator)
National Women’s Health
Auckland City Hospital, Auckland, New Zealand

Alex Spyropoulos, MD, FACP, FCCP, FRCPC
Northwell Health, New York City, New York

Alok A. Khorana, MD, FACP, FASCO
Cleveland Clinic, Cleveland, Ohio

Prof. Beverley Hunt, MD, OBE
King’s College, London, England

Clotting Risks During Hospitalization: Exploring General Thromboprophylaxis and Special Cases

This webinar, co-hosted by the International Society on Thrombosis and Haemostasis and the Centers for Disease Control (Division of Blood Disorders), provides an overview on clotting risks during hospitalization.

August 19, 2021

Raj Kasthuri, MBBS
Professor of Medicine, Division of Hematology
Director of the UNC Hereditary Hemorrhagic Telangiectasia Center of Excellence
Associate Director for Clinical Research,
UNC Blood Research Center
University of North Carolina at Chapel Hill

Hanny Al-Samkari, MD
Assistant Professor of Medicine, Harvard Medical School
Classical Hematologist and Clinical Investigator,
Division of Hematology Oncology
Massachusetts General Hospital
Associate Director of the Massachusetts General Hospital Hereditary Hemorrhagic Telangiectasia Center of Excellence
Boston, Massachusetts

Hereditary Hemorrhagic Telangiectasia in 2021: Diagnosis and Advances in Treatment

Hereditary hemorrhagic telangiectasia (HHT, Osler-Weber-Rendu disease) is an autosomal dominant bleeding disorder due to abnormal blood vessel formation affecting approximately 1 in 5,000 individuals. Diagnosis and management of HHT can be challenging and requires a multidisciplinary approach.

In this webinar, Dr. Kasthuri and Dr. Al-Samkari discuss various aspects of HHT including inheritance, clinical manifestations, approach to diagnosis, screening and management. The prevalence of anemia in the HHT population and challenges with its management that are unique to HHT will be emphasized, as will the emergence of systemic therapies to treat bleeding. In particular, systemic antiangiogenic treatments that are changing the treatment landscape of HHT will be highlighted. Additionally, the recently published Second International Guidelines for the Diagnosis and Treatment of HHT will be reviewed and discussed.

June 24, 2021

Alexis A. Thompson, MD, MPH
Hematology Section Head
A. Watson and Sarah Armour Endowed Chair for Blood Diseases and Cancer

Ann & Robert H. Lurie Children’s Hospital of Chicago
Professor of Pediatrics, Northwestern University Feinberg School of Medicine

Associate Director for Equity and Minority Health
Robert H. Lurie Comprehensive Cancer Center and Northwestern University Feinberg School of Medicine

Bone Marrow Transplantation and Other Curative Approaches in Thalassemia

The thalassemia syndromes are a group of genetic blood disorders in which the production of one of the two different globin proteins (alpha or beta) that make up hemoglobin is reduced or absent. The result is anemia due to both ineffective erythropoiesis and chronic hemolysis, which typically begins in early childhood and lasts throughout life.

The clinical severity of thalassemia and interventions needed depend upon the globin chain affected and the type of genetic mutation. Persons with the most severe forms of thalassemia often require regular transfusions to treat the anemia and chelation therapy to prevent iron overload and associated sequelae. However, many patients with transfusion-dependent thalassemia (TDT) have struggled with adherence to the ongoing, intensive treatment regimen. Recent innovations, such as oral iron chelation agents, have helped improve adherence, and thus, prognoses (i.e., survival and quality of life in persons with TDT). Nonetheless, some patients and families are interested in definitive, potentially curative treatments.

In this webinar, Dr. Thompson describes considerations for stem cell transplantation, including patient characteristics, donor stem cell sources, and preparative regimens that impact clinical outcomes. She provides an overview of genomic therapies, such as gene addition and gene editing, and reviews the results of clinical studies on thalassemia.

March 11, 2021

Rachel P. Rosovsky, MD, MPH
Director, Thrombosis Research, Division of Hematology,
Massachusetts General Hospital

Assistant Professor of Medicine, Harvard Medical School
Boston, Massachusetts

Multidisciplinary Care for Acute Pulmonary Embolism: The Pulmonary Embolism Response Team

Pulmonary embolism (PE) is a major cause of morbidity and mortality in the United States, accounting for up to 100,000 deaths annually. Although there has been a surge of new therapeutic tools and strategies designed to treat patients with PE, the outcomes for patients who present with massive or high-risk PE remain dismal.

In this webinar, Rachel Rosovsky, MD, discusses the model and purpose of pulmonary embolism response teams (PERT), presents the structure and organization, examines evidence for efficacy and usefulness, and shares the mission of the PERT Consortium. She also discusses future directions for research that will help evaluate the value of this innovative model and determine if this collaborative approach improves PE outcomes, improves clinical care, is cost effective, enriches patients’ quality of life, and advances the science of PE treatment.

February 25, 2021 

Jean Grow, PhD
Professor of Advertising, Emeritus, and Co-Director of the Institute for Women’s Leadership
Marquette University
Milwaukee, Wisconsin

Nathan T. Connell, MD, MPH
Assistant Professor of Medicine, Harvard Medical School
Associate Physician in the Hematology Division
Brigham and Women’s Hospital
Boston, Massachusetts

Angela Weyand, MD
Assistant Professor of Pediatric Hematology and Oncology
University of Michigan
Ann Arbor, Michigan

Joint Guidelines on the Diagnosis and Management of von Willebrand Disease

The American Society of Hematology (ASH), International Society on Thrombosis and Hemostasis (ISTH), National Hemophilia Foundation (NHF), and World Federation of Hemophilia (WFH) came together to develop updated clinical practice guidelines on the diagnosis and management of von Willebrand Disease (VWD). In this webinar, three of the guideline development panelists, Jean Grow, PhD, Nathan Connell, MD, MPH, and Angela Weyand, MD, present key recommendations from the guidelines, the process through which they were developed, and implications for the improved diagnosis and management of people with VWD.