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Recording

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2023 International Prophylaxis Study Group (IPSG) Virtual Symposium was held on the 15th of November.

Expert Working Group Reports

Itinerary

  1. International Prophylaxis Study Group (IPSG)

    Dr. Victor Blanchette

  2. SickKids Foundation

    Stefanie McPherson, VP Corporate and Community Partnerships, SickKids Foundation

  3. Imaging Expert Working Group

    Co-Chairs: Dr. Bjorn Lundin / Dr. Olympia Papakonstantinou

  4. Pharmacokinetics Expert Working Group

    Co-Chairs: Dr. Guy Young/ Dr. Alfonso Iorio

  5. Musculoskeletal Health Expert Working Group

    Co-Chairs: Dr. Sharon Funk / Dr. Merel Timmer

  6. Clinical Prophylaxis Expert Working Group

    Co-Chairs: Dr. Thierry Lambert / Dr. Cindy Leissinger

  7. Access Expert Working Group

    Co-Chairs: Dr. Karin Berger / Dr. Louis Aledort

  8. Meeting Summary

    IPSG Executive

Meet Your Speakers

Dr. Björn Lundin, MD, PhD

Co-Chair, Moderator

Björn Lundin, MD, PhD

Björn Lundin is Associate Professor of Radiology at Lund University and Senior Consultant at the Center for Medical Imaging and Physiology at Skåne University Hospital, Sweden. He obtained his degree in medicine from the University of Lund, and he is a specialist in diagnostic radiology. His research work has been on several topics in the field of musculoskeletal radiology, with special interest in MRI and hemophilic arthropathy.

Dr Lundin is a member of the Swedish Medical Association as well as of the Swedish Societies of Medicine, Radiology and Musculoskeletal Radiology, and he is Board member of the latter society. He is also a faculty member of the Lund University MRI School, and he is Co-Chair of the Imaging Expert Workgroup of the International Prophylaxis Study Group. He has numerous papers published in professional journals and abstracts published in the proceedings of international scientific congresses.

Dr. Olympia Papakonstantinou, MD

Speaker

Dr. Olympia Papakonstantinou, MD

Olympia Papakonstantinou is an Associate Professor in Radiology at the National and Kapodistrian University of Athens, Greece. She obtained her degree in medicine from the National and Kapodistrian University of Athens in 1988, became a qualified radiologist in 1993, and completed her PhD thesis“Assessment of liver iron overload in beta thalassemia with MR imaging techniques”. Dr. Papakonstantinou completed her Research fellowship in Musculoskeletal Radiology at University of California at San Diego (Chair: DL Resnick: 2000-2001).

She has 70 peer reviewed publications in international journals, and greater than 100 invited lectures and 200 presentations in international and national meetings.

Dr. Sharon McHugh Funk, PT, DPT

Speaker

Dr. Sharon McHugh Funk, PT, DPT

Sharon has been treating persons with hemophilia for over 41 years, and was a founding member of the National Hemophilia Foundation’s (now the National Bleeding Disorders Foundation -NBDF) Physical Therapy Working Group. She developed the joint evaluation tool for the Joint Outcome Study; a prospective, randomized study comparing the joint outcomes of young boys with hemophilia on primary prophylaxis versus those receiving on-demand therapy. She has been involved in the development and psychometric testing confirming the reliability and validity of the Hemophilia Joint Health Score. (HJHS), an impairment measure for evaluating joint disease in hemophilia.

She is currently the co-chair of the Musculoskeletal Health Expert Working Group of the Hemophilia International Prophylaxis Study Group, of which she has been a member for the past 21 years. She is a member of the American Physical Therapy Association, the National Bleeding Disorders Foundation (NBDF) and the World Federation of Hemophilia Musculoskeletal Committee. In 1997, she was the recipient of the first NHF Physical Therapist of the Year Award and in 2001 she received the National Hemophilia Foundation Physical Therapy Excellence Fellowship.

Dr. Merel Timmer, PT, PhD

Speaker

Dr. Merel Timmer, PT, PhD

Merel Timmer has a MSc in Human Movement Sciences and in Clinical Epidemiology and a BSc in Physiotherapy. In 2013 she started working at the van Creveldkliniek as a physiotherapist for children and adults with haemophilia and in 2018 she finished her PhD titled: “joints, functioning and movement behavior in haemophilia”. Currently, she supervises 2 PhD students as a co-promotor in the field of physiotherapy and ultrasound for patients with haemophilia. In addition, she works as a lecturer in the MSc clinical health sciences, particularly in the graduation track Physiotherapy Science. She is a past member of the science board of the Royal Dutch Association of Physical Therapy and a current member of the EAHAD physiotherapy committee.

Dr.Guy Young

Co-Chair

Guy Young, MD

Guy Young, MD, received his medical degree from the State University of New York at Stony Brook School of Medicine in Stony Brook, New York. He completed a residency in pediatrics at Schneider Children’s Hospital at Long Island Jewish Medical Center, Albert Einstein College of Medicine in New York, and a fellowship in pediatric hematology/oncology at Children’s National Medical Center, George Washington University School of Medicine in Washington, D.C.

Dr. Young is the Director of the Hemostasis and Thrombosis Center at Children’s Hospital Los Angeles and an Associate Professor of Pediatrics at the University of Southern California’s Keck School of Medicine.

His current research activities encompass clinical trials in hemophilia, the use of novel anticoagulants in children, and the development of the global hemostasis assays to monitor the effects of medications used to treat bleeding in hemophilia.

Dr. Young has published many journal articles, abstracts, and textbook chapters and has delivered lectures, workshops, and presentations at national and international meetings. He is a past Board member and past chair of the program committee for the American Society of Pediatric Hematology/Oncology, and also a past chair of the program committee for the Hemophilia and Thrombosis Research Society. He is the former chair of the Scientific and Standardization Committee on Factor VIII, Factor IX, and Rare Bleeding Disorders of the International Society on Thrombosis and Haemostasis and also serves on the Scientific Subcommittee on Hemostasis for the American Society of Hematology. He has been awarded the National Hemophilia Foundation Physician of the Year Award in 2013.

Dr. Alfonso Iorio

Speaker

Dr. Alfonso Iorio

Alfonso Iorio is Professor and Chair, Department of Health Research Methods, Evidence, and Impact at McMaster University Canada. He is Director of the Health Information Research Unit (HiRU, http://hiru.mcmaster.ca/hiru) and of the Hamilton-Niagara Hemophilia Program.

He received his medical and PhD degrees from the University of Perugia, Italy.

He is the Principal Investigator of the Web Application for Population Pharmacokinetic in Hemophilia (WAPPS) project (www.wapps-hemo.org), co-investigator of the Patient Reported Outcomes, Burden, and Experiences (PROBE), and Chair of the Canadian Bleeding Disorders Registry (CBDR).

He is past-chair of the WFH Data and Demographics committee, and co-chair of the World Bleeding Disorders Registry (WBDR).

He is Associate Editor for bleeding disorders of the Cochrane Collaboration, Thrombosis Research, and serves on the Editorial Boards of numerous journals including the Journal of Thrombosis and Haemostasis, and Haemophilia.

Outside Hemophilia, his current research interests include internet-based knowledge dissemination, systematic review and meta-analysis methodology, risk prediction and stratification, and artificial intelligence application to all of them.

He has authored over 300 peer reviewed papers totaling over 20,000 citations and a H-index of 59 (details available on his personal page Google Scholar). He has given many lectures, including educational lectures at many international conferences.

Dr. Thierry Lambert, MD

Speaker

Dr. Thierry Lambert, MD

Dr Thierry Lambert is a consultant in hematology, specialized in hemophilia and rare constitutional bleeding disorders. After having been medical director of blood transfusion service in the Bicêtre AP-HP Hospital, Paris, France until 1997, he then acted as Director of the Regional Hemophilia Treatment Center (CRTH) in the same location and was Regional Hemophilia Coordinator. He is a member of the Steering Committee of the European Hemophilia Safety surveillance (EUHASS). He is also co-chair of the international working group on prophylaxis (IPSG) and member of the scientific committee of the French Hemophilia Association (AFH), national patient organization, member of the WFH. Principal investigator or sub investigator in more than ten studies focusing on the treatment of hemophilia.

Dr. Cindy Leissinger, MD

Speaker

Dr. Cindy Leissinger, MD

Dr. Leissinger is currently Professor of Medicine, and Clinical Professor of Pediatrics and Pathology at Tulane University, and is Chief of the Hematology/Oncology Division. She is also Director of the Louisiana Center for Bleeding and Clotting Disorders. She is a fellow of the American College of Physicians and a member of the American Society of Hematology and the International Society on Thrombosis and Haemostasis. She currently serves as the president-elect of the Hemostasis and Thrombosis Research Society.

Dr. Leissinger received her medical degree from Tulane University School of Medicine in New Orleans, Louisiana. She completed a residency in internal medicine at Tulane, a research fellowship in hematology at The National Institutes of Health in Bethesda, Maryland, and a clinical fellowship in hematology and medical oncology at Tulane.

In addition to caring for patients with coagulation disorders, Dr. Leissinger oversees an active research program that receives funding from the National Institutes of Health as well as numerous other federal and industry sources. She participates in several clinical research groups, and has been an active investigator for many research studies related to bleeding disorders, with a particular interest in Factor VIII inhibitor development and management.

Dr. Karin Berger, PhD

Speaker

Dr. Karin Berger, PhD

Karin Berger is a senior researcher at the Ludwig-Maximilian-University Munich, hospital department oncology / haematolgy and Insitute for Medical Informatics, Processing, Biometry and Epidemiology. She is head of the working group outcomes research, health economics and access. Her current research interest is on clinical and patient reported outcomes research, treatment pattern analysis, patient flow analyses, health economic evaluation analyses, real world data applications and HTA assessments. Before joining the Med III Karin Berger has been a researcher at the department for transfusion medicine, cell therapeutics and hemostasis at the University Hospital of Munich for 17 years. In this position she has been involved in national and international outcomes research studies and health economic analyses on very cost intensive treatments with blood and blood products. Further she has been actively involved in discussions with payers and clinicians on optimization strategies of these expensive treatments.​

Dr. Louis M. Aledort, MD

Speaker

Dr. Louis M. Aledort, MD

Dr. Aledort is a chaired Professor of Medicine at the Mount Sinai School of Medicine. He was educated and trained at Albert Einstein College of Medicine, Universities of Rochester and Virginia, and spent two years at the National Institute of Health. He has spent his career in the area of bleeding disorders.

He has served as consultant to the World Health Organization, Pan American Health Organization, House Ways & Means Committee. He has chaired and/or been a member of the practice committees of the American Society of Hematology and American College of Physicians.

He has written more than 400 articles on several aspects of bleeding and clotting disorders. Emphasis has been on the supply availability and affordability of blood products. He has been involved in developing health care programs and their underwriting in developing nations. Dr. Aledort has consulted for CSL Behring, American Red Cross, and Baxter BioScience.

He has received the Lifetime Achievement Awards from the Hemostasis and Thrombosis Research Society and from the Albert Einstein College of Medicine.

2023 International Prophylaxis Study Group (IPSG) Virtual Meeting