IMPACT Workshop
Hemophilia Federation of America’s Improving Minority Participation and Advocacy in Clinical Treatment (IMPACT) Workshop will provide a virtual training space for Hemophilia Treatment Centers (HTCs) and HFA’s member organizations to learn about and collaborate on equity in clinical treatment practices and the barriers to care that exist to diversity in clinical trials.
The first two days of the event will be focused on education and instruction from subject matter experts, with the final day of the workshop allowing for confidential and challenging roundtable discussions as well as opportunities for large group share outs and Q & A.
This workshop is by invitation only. If you have received an invitation, please proceed to REGISTER. For more information, email publicaffairs@hemophiliafed.org.
Day 1: Jan. 16, 2024 from 1 to 3 p.m. EST
Introductory session that clearly defines the relationship between clinical care and clinical trial diversity in a way that pays respect to the importance and nuance of both issues. Plus Two Education sessions:
• Panel session featuring with the goal of outlining how barriers to care impact patients’ ability to ultimately receive the full benefits of a health system, namely clinical trial participation.
• Discussion on barriers and the reality of emergency room care and focus on what physicians are doing to address the gaps that exist.
Day 2: Jan. 23, 2024 from 1 to 3 p.m. EST
Includes:
• Presentations from member organization executives, in a soft-panel structure, around specific health equity-focused programs in the bleeding disorder space.
• Patient experience spotlight highlighting barriers to care in geography, alternating between care centers, travel time to an HTC or clinical trial site, trial experience, and hesitations around participation.
• Patient Experience Live Q&A.
Day 3: Jan.30, 2024 from 1 to 2:30 p.m EST
• Introductory session on current policy considerations and legislation before being broken out into separate breaks.
• Break-out sessions.
• Group Discussions on topics, lessons, and ideas.
• Final wrap, including Round Robin Discussion led by self-assigned group leaders.
• Post-meeting action planning and grant proposal application walk-through.
Speakers
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Dr. Jill JohnsenDr. Johnsen is a physician scientist with expertise in classical (benign) hematology. She is an Associate Professor of Medicine at the University of Washington and sees patients at the Washington Center for Bleeding Disorders. She studies the genetics and biology of variation in clotting factors and blood groups (blood types), with emphasis on coagulation factor VIII (FVIII), factor IX (FIX), and von Willebrand factor (VWF). She is particularly interested to leverage these research efforts towards better understanding how bleeding uniquely impacts females. Her research program is dedicated to improving the diagnosis and care of patients with blood disorders through advancement of our basic understanding of the underlying biology and through the translation of new knowledge and laboratory innovations to improve clinical testing. Her research leverages new technologies, including targeted and whole genome next generation DNA sequencing, multi-omics, long-read sequencing, and new and novel molecular methods. In vitro functional studies, including large scale deep mutational scanning of genes of interest in mammalian cell display systems, will inform and improve interpretation of the functional significance of DNA variants discovered in hemophilia.
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Dr. Robert SidonioDr. Sidonio’s interest in hemostasis began during his pediatric residency at the University of Louisville under the mentorship of Dr. Sanjay Ahuja. Subsequently under Dr. Margaret Ragni’s research guidance during his fellowship he was accepted to the ASH Clinical Research Training Institute (CRTI) in 2009. Following fellowship at the University of Pittsburgh, he took a position as Director of Pediatric Hemostasis and Thrombosis Program at Vanderbilt University. Under Dr. Michael DeBaun’s mentorship he was able to obtain to obtain a KL2 to investigate the bleeding tendency in hemophilia A carriers. In August 2014, Dr. Sidonio accepted the position of Associate Director of Hemostasis and Thrombosis at Emory University/Children’s Healthcare of Atlanta. Dr. Sidonio is continuing his clinical research investigating the bleeding phenotype and genotype of hemophilia A carriers funded by the Hemophilia of Georgia Clinical Scientist Development Grant and HTRS Mentored Research Award.
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Dr. Tami Singleton
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