EMS Education

EMS Provider Education Regarding Bleeding Disorders and the Treatment Required in an Emergency

Year:
-
Grants:
Nursing Excellence Fellowship
Author(s):
Lydia Johnson

People with bleeding disorders are often connected to and with various community members such as local and national foundations/associations, their home health company, nurses , pharmaceutical representatives, etc. While people are often encouraged to wear medic alert ID, they do not know anyone in the EMS system who may be caring for them in case of an emergency. Through this project, EMS providers will receive education regarding bleeding disorders and the treatment required in an emergency. This project will seek to connect the HTC's with the EMS systems locally and regionally to coordinate the education with the EMS professionals to provide care.

Navigating the Emergency Department: A Collaboration Among Hemophilia Treatment Center Staff, Emergency Department Staff & Bleeding Disorder Chapter Staff

Navigating the Emergency Department: A Collaboration Among Hemophilia Treatment Center Staff, Emergency Department Staff & Bleeding Disorder Chapter Staff

Year: 2019
Grants:
Bleeding Disorders Conference
Collaboration/Team Models
Author(s):
Cristina Tanago, Ann Otte, Helen Lamping, Lisa Raterman, Lisa Littner
Patient Perspectives on the Impact of Severe or Moderate Hemophilia on Physical Activity: HemACTIVE Survey Findings from the US and Canada

Patient Perspectives on the Impact of Severe or Moderate Hemophilia on Physical Activity: HemACTIVE Survey Findings from the US and Canada

Year: 2019
Grants:
Bleeding Disorders Conference
Quality of Life/Outcomes Research
Author(s):
Greig Blamey, Gregory LeCleir, Kate Khair
The Patient Reported Outcomes Burdens and Experiences (PROBE) Study Questionnaire Development and Validation

The Patient Reported Outcomes Burdens and Experiences (PROBE) Study Questionnaire Development and Validation

Year: 2019
Grants:
Bleeding Disorders Conference
Quality of Life/Outcomes Research
Author(s):
D. Page, J. Stonebraker, A. Iorio, C. Chai-Adisaksopha, B. O’Mahony, D. Noone, R. Curtis, Neil Frick, M. Nichol, Mark Skinner
Novel Therapeutics for Hemophilia

Novel Therapeutics for Hemophilia

Year:
-
Grants:
Innovative Investigator Research Award
Hemophilia A (Factor VIII/F8)
Author(s):
Shannon L. Meeks

Dr. Meeks is an Associate Professor of Pediatrics in the Department of Pediatrics at the Emory University School of Medicine and the Aflac Cancer and Blood Disorders Center of Children’s Healthcare of Atlanta. She obtained a Bachelor of Science in Mathematics from Duke University where she was elected to Phi Beta Kappa. After earning her medical degree from the University of Mississippi, she completed her clinical training at the University of Virginia and Emory University. Dr. Meeks has a basic, translational, and clinical research interest in the development of inhibitors in hemophilia A. Her work has focused on the early immune response to factor VIII and the diversity of the B-cell response to factor VIII. She is a former NHF clinical fellow who currently has funding to pursue these projects from the Hemostasis and Thrombosis Research Society and the National Institutes of Health.

PiggyBac Mediated Gene Transfer for Coagulation Disorders

PiggyBac Mediated Gene Transfer for Coagulation Disorders

Year:
-
Grants:
Career Development Award
Gene Therapy
Author(s):
Janice M. Staber
Dr. Staber received her undergraduate e degree in biochemistry from the University of Iowa. She received her MD from the Carver College of Medicine at the University of lowa. She received strong mentorship under the guidance of Drs. Paul McCray and Steven Lentz during her post-doctoral research in gene therapy and hemophilia studies. She was subsequently appointed a faculty position at the University of Iowa Children's Hospital in 2010 and became Assistant Professor of Pediatrics in the Division of Hematology/Oncology in 2013.
Developing a Point-of-Care Testing for Hemophilia

Developing a Point-of-Care Testing for Hemophilia

Year:
-
Grants:
Innovative Investigator Research Award
Hemophilia A (Factor VIII/F8)
Author(s):
Jill M. Johnsen

Dr. Jill Johnsen is scientist and physician at the Washington Center for Bleeding Disorders in Seattle, WA.  She is an Associate Member at the Bloodworks Research Institute and also an Associate Professor of Medicine in the Division of Hematology at the University of Washington. Her research focuses on the study of hereditary and acquired modifiers of blood traits, with particular emphasis on the genetics and biology of variation in blood group and coagulation factors such as factor VIII, factor IX, and von Willebrand Factor.  Dr. Johnsen is honored by this award and grateful for this support that will further the development of a test to enable patients and providers to determine factor levels much more quickly without needing to send blood to a lab.