Online Education

An Overview of the Background, Inheritance and Pathophysiology of von Willebrand Disease

October 24, 2022
The estimated time to complete this activity is 45 minutes.

The purpose of this online learning activity is to enable the learner to develop an understanding of von Willebrand disease (VWD) by examining the discovery and evolution of scientific knowledge about VWD; genetic inheritance of the bleeding disorder; production, structure, and functions of von Willebrand factor (VWF); and characteristics of the different types of VWD.

• Review the history of von Willebrand Disease (VWD), including its discovery and evolution of scientific understanding of the bleeding disorder
• Discuss the epidemiology, inheritance, and diagnosis of VWD
• Examine the production, structure, and functions of von Willebrand factor (VWF)
• Differentiate the types and subtypes of VWD, including types 1, 2, and 3

This enduring material is intended for nurses and other healthcare professionals employed within the federally recognized U.S. hemophilia treatment center network (USHTCN) seeking training on von Willebrand disease (VWD) relating to the history and evolution of our understanding of the condition, the role of von Willebrand factor (VWF), and the differentiation of the multiple classifications of VWD.

This online learning activity provides an outline of the history, inheritance, and pathophysiology of von Willebrand Disease (VWD). It includes a description of how VWD was discovered and traces the evolution of knowledge about the bleeding disorder. It also details the genetic inheritance of VWD and the likelihood that offspring of an affected parent will be born with VWD. The activity examines the production and many functions of von Willebrand factor, described as “the Jedi knight of the bloodstream.” Finally, the activity differentiates the types of VWD on the basis of laboratory features. VWF function, VWF multimer quantity and quality, and symptoms.

• Roshni Kulkarni, MD
• Usha M. Reddy, MD
• Bruce L. Evatt, MD
• Connie H. Miller, PhD

If you have any questions about this activity, please contact Brooke Hernandez in Indianapolis, IN, 317-871-0011 ext. 813, toll-free 877-256-8837, or via email at bhernandez@ihtc.org. For technical support please email support@partnersprn.org or open a ticket in the Partners Support Center.

• 2 gigabytes of RAM
• High speed internet connection
• Any one Internet browser (current version) – Firefox, Safari, Chrome, or Edge 
  • Cookies and JavaScript must be enabled in the browser

Gene Therapy for Providers 101

July 01, 2022

The estimated time to complete this activity is 45 minutes.

The purpose of this activity is to enable learners to develop basic knowledge of gene therapy for hemophilia, thereby enhancing learner competence to discuss gene therapy with patients who may benefit from this emerging treatment.

This learning activity provides basic education on hemophilia gene therapy, including the aims of gene therapy; the packaging, delivery, and activity of the replacement genes; and the means by which the replacement genes lead to production and/or availability of normal clotting factor in persons with hemophilia. The module will also review information that may be particularly important when discussing hemophilia gene therapy with patients, such as knowledgeable informed consent, outcomes data, and potential risks and benefits.

This enduring material is intended for multidisciplinary providers at hemophilia treatment centers, including nurses, physicians, pharmacists, physical therapists, social workers, and genetic counselors providing care to persons with hemophilia A and hemophilia B.

At the conclusion of this enduring material, the participants should be better able to:

• Describe a pathway to preparedness for gene therapy from education of the multidisciplinary healthcare team to clinical delivery
• Provide an overview of the goal of gene therapy for hemophilia
• Explain the elements of gene therapy (i.e. packaging, administration, mechanism of action)
• Define the profile of gene therapy candidates with FVIII deficiency and FIX deficiency
• Review known adverse effects from completed and ongoing clinical trials
• Articulate critical considerations for the multidisciplinary healthcare team in providing care for patients receiving gene therapy
• Discuss issues related to obtaining knowledgeable informed consent and counseling patients

• Steven Pipe, MD
• Shelley Crary, MD, MSCS

If you have any questions about this activity, please contact Brooke Hernandez in Indianapolis, IN, 317-871-0011 ext. 813 or via email at bhernandez@ihtc.org. For technical support please email support@partnersprn.org or open a ticket in the Partners Support Center.

• 2 gigabytes of RAM
• High-speed internet connection
• Internet browser (current version) – Firefox, Safari, Chrome, or Edge
  • Cookies and JavaScript must be enabled in the browser

Gene Therapy for Providers 201

July 01, 2022

The estimated time to complete this activity is 60 minutes.

The purpose of this activity is to enable HTC multidisciplinary staff and institutional stakeholders to gain knowledge on the steps necessary to prepare an institution to administer AAV-mediated gene therapy for hemophilia.

This learning activity is a process-oriented intermediate course that will guide HTC staff through the steps an institution must take to prepare to administer hemophilia gene therapy upon commercial availability of these products.

This enduring material is intended for HTC multidisciplinary staff (physicians, physician assistants, nurses, nurse practitioners, physical therapists, social workers, pharmacists, geneticists, genetic counselors, infusion room staff) and institutional stakeholders (e.g., HTC administrators and directors, clinic and pharmacy billing staff, insurance coordinators).

At the conclusion of this enduring material, the participants should be better able to:

• Identify patients who are eligible for AAV-mediated gene therapy
• Discuss key concepts involving education and shared decision-making for gene therapy
• Identify logistical/infrastructure requirements to procure, reconstitute and administer gene therapy at a dosing site
• Articulate the regional approach of preparing for gene therapy administration
• Distinguish the roles and responsibilities within the HTC team involved in the safety and efficacy assessments during short-and long-term monitoring before and after gene therapy
• Describe approaches to prevention, diagnosis, and treatment of vector-induced transaminitis after gene therapy

• Rebecca Kruse-Jarres, MD, MPH
• Ulrike Margret Reiss, MD
• Courtney Dawn Thornburg, MD, MS

If you have any questions about this activity, please contact Brooke Hernandez in Indianapolis, IN, 317-871-0011 ext. 813 or via email at bhernandez@ihtc.org. For technical support please email support@partnersprn.org or open a ticket in the Partners Support Center.

• 2 gigabytes of RAM
• High-speed internet connection
• Internet browser (current version) – Firefox, Safari, Chrome, or Edge
  • Cookies and JavaScript must be enabled in the browser

Gene Therapy for Providers 301

July 01, 2022

The estimated time to complete this activity is 60 minutes.

The purpose of this activity is to enable HTC multidisciplinary staff and hospital staff to support patients and their families as they consider hemophilia gene therapy, including education of patients and families on basic concepts in hemophilia gene therapy; administrative preparedness for providers; and short- and long-term care demands.

This learning activity is a process-oriented intermediate course that will guide HTC staff through the steps an institution must take to prepare to administer hemophilia gene therapy upon commercial availability of these products.

This enduring material is intended for physicians, physician assistants, nurses, nurse practitioners, physical therapists, social workers, pharmacists, and infusion room staff.

At the conclusion of this enduring material, the participants should be better able to:

• Discuss introductory concepts in hemophilia gene therapy
• Outline the process of preparing patients, hemophilia treatment centers, and hospital systems for the administration of gene therapy
• Explain the steps necessary for multidisciplinary team members to engage in shared patient-centered and population focused problem solving when procuring a hemophilia gene therapy product, preparing the product, and infusing the patient safely
• Discuss short term monitoring, specifically immediately after infusion and during the first three months of follow up
• Discuss long term monitoring, specifically from 3 to 24 months post infusion and > 24 months post infusion

• Doris V. Quon, MD
• Lindsey A. George, MD

If you have any questions about this activity, please contact Brooke Hernandez in Indianapolis, IN, 317-871-0011 ext. 813 or via email at bhernandez@ihtc.org. For technical support please email support@partnersprn.org or open a ticket in the Partners Support Center.

• 2 gigabytes of RAM
• High-speed internet connection
• Internet browser (current version) – Firefox, Safari, Chrome, or Edge
  • Cookies and JavaScript must be enabled in the browser

Hemophilia in Pictures

2005

The purpose of Hemophilia in Pictures is to provide basic knowledge about hemophilia through pictures and easy-to-understand information.

This online learning module covers a range of topics, including an introduction to hemophilia, assessing and managing bleeds, treatment of bleeds, staying healthy and preventing bleeds, and venipuncture and home therapy.

Hemophilia in Pictures is for hemophilia educators and people with hemophilia alike. The information is basic and is provided through pictures and easy-to-understand language, so it is accessible to anyone.

Hemophilia in Pictures has many goals. Please refer to the HIP Educators Guide to learn more about the educational goals for Educators as well as People with Hemophilia.

• Lara Oyesiku, Chair of the HIP Working Group and Nurse's Committee, England
• Martin Bedford, Educational Advisor, England
• Annie Gillham, Nurse Advisor, South Africa
• Dr. Peter Jones, Medical Advisor, England
• Kathy Mulder, Physiotherapy Advisor, Canada
• David Page, Educational Advisor, Canada
• Laurie Blackstock, WFH Education Officer

Upon launching the presentation, there are three handouts available for you to print or save for future reference: Educator Guide, Educator Glossary, and On Screen Notes.
To access the handouts, click on the slide notes and resources.

If you have any questions about this activity, please contact Brooke Hernandez in Indianapolis, IN, 317-871-0011 ext. 813 or via email at bhernandez@ihtc.org. For technical support please email support@partnersprn.org or open a ticket in the Partners Support Center.

• 2 gigabytes of RAM
• High-speed internet connection
• Internet browser (current version) – Firefox, Safari, Chrome, or Edge
  • Cookies and JavaScript must be enabled in the browser

How Does Blood Clot?

The purpose of this activity is to enable the learner to improve understanding of and increase interest in the basic concepts involved in the complex coagulation process to ultimately improve patient care.

• Examine the coagulation process from the point of injury to clot resolution.
• Evaluate the platelet reaction step of normal hemostasis.
• Differentiate among the three coagulation pathways, including the various clotting factors that participate in hemostasis.

Nurses and other healthcare staff employed within or affiliated with the U.S. Hemophilia Treatment Center (HTC) network.

An animated module illustrating the coagulation cascade.

• Roshni Kulkarni, MD
• Usha M. Reddy, MD
• Bruce L. Evatt, MD

If you have any questions about this activity, please contact Brooke Hernandez in Indianapolis, IN, 317-871-0011 ext. 813, toll-free 877-256-8837, or via email at bhernandez@ihtc.org. For technical support please email support@partnersprn.org or open a ticket in the Partners Support Center.

• 2 gigabytes of RAM
• High speed internet connection
• Any one Internet browser:
  • Firefox (Most Current Version)
  • Safari (Most Current Version)
  • Google Chrome (Most Current Version)
  • MS Internet Explorer (Most Current Version)
  • Cookies and JavaScript must be enabled in all browsers.
  • All browsers must have flash plug in installed and enabled.
• Cookies and JavaScript must be enabled in all browsers.
• All browsers must have flash plug in installed and enabled.
• Please note: This program requires FLASH PLAYER. If your computer does not have FLASH PLAYER, or does not allow such files to play, you will not be able to view this program. You will need to speak to your institution’s Information Technology department about enabling or installing FLASH PLAYER onto your computer.

The Role of the Nurse in Hemophilia Care

The purpose of this module is to familiarize the learner with the critical role nurses play worldwide in the multidisciplinary care team.

• Examine the critical and variable role of the nurse in the care of people with hemophilia.
• Review the role responsibilities of the nurse related to education, care delivery, coordination of the healthcare team, and support of patient and family to learn to live with hemophilia.

While there are some responsibilities that are universal for all nurses, there is also a great deal of variation in the role and responsibilities of nurses in hemophilia care. This learning module describes those roles and responsibilities and some of the variation that may occur throughout the world.

• World Federation of Hemophilia

June 18, 2013

This module was created to describe the worldwide variation in the role and responsibilities of nurses in hemophilia care.

If you have any questions about this activity, please contact Brooke Hernandez in Indianapolis, IN, 317-871-0011 ext. 813 or via email at bhernandez@ihtc.org. For technical support please email support@partnersprn.org or open a ticket in the Partners Support Center.

• 2 gigabytes of RAM
• High-speed internet connection
• Internet browser (current version) – Firefox, Safari, Chrome, or Edge
  • Cookies and JavaScript must be enabled in the browser