Core Leadership Team

Dr. Rae Yeung

Rae S. M. Yeung, MD, PhD, FRCPC

The Hospital for Sick Children (SickKids) and University of Toronto

Toronto, ON, Canada

Dr. Rae Yeung is a Professor of Paediatrics, Immunology, and Institute of Medical Science at the University of Toronto. At the Hospital for Sick Children (SickKids), Dr. Yeung holds the Hak-Ming and Deborah Chiu Chair in Translational Paediatric Research and is a Senior Scientist in Cell Biology and Scientific Director of its Biobank. Dr. Yeung’s research aims to understand the mechanisms governing autoimmunity, specifically the mechanisms involved in initiating and sustaining the immune response. Dr. Yeung is leading both national and international efforts to understand the biologic basis for heterogeneity in childhood arthritis and rheumatic diseases towards personalized treatment decisions for affected children. She is the founding chair of CAPRI (Canadian Alliance of Paediatric Rheumatology Investigators) and UCAN (Understanding Childhood Arthritis Network), a translational research network collectively representing over 300 sites from 50 countries.

Activity Lead:

  • Biomarker Program

Committees: 

  • Co-chair: Executive Committee
  • Co-chair: Research Operations Committee
  • Co-chair: Data Access Advisory Committee
  • Commercialization Advisory Committee
  • Steering Committee

Working Groups:

  • Co-chair: Discovery Phase Working Group
  • Co-chair: Budget Working Group
  • Validation Phase Working Group – Biobank Data
  • Analytical Framework Working Group

Nico Wulffraat, MD, PhD

Wilhelmina Children’s Hospital and University Medical Center Utrecht

Utrecht, Netherlands

Dr. Nico Wulffraat is the Director of Paediatric Rheumatology, Immunology, Hematology and Infectious Diseases at Wilhelmina Children’s Hospital, as well as the Supervisor of the Paediatric Rheumatology Postgraduate Clinical Fellowship at University Medical Center Utrecht (UMCU). He supports the Juvenile Idiopathic Arthritis (JIA) Patient Council in setting the research agenda at UMCU for childhood inflammatory diseases.

Dr. Wulffraat also serves as the Project Coordinator of the European initiative of SHARE (Single Hub and Access point for Paediatric Rheumatology in Europe), which aims to document standards of care and treatment recommendations for paediatric rheumatic diseases throughout Europe. He is also the Coordinator of PHARMAChild, a pharmacovigilance project belonging to Paediatric Rheumatology European Society (PRES) and Paediatric Rheumatology International Trials Organization (PRINTO), which observes children with JIA undergoing treatment with methotrexate or biologic agents for three to ten years to collect adverse events.

Dr. Wulffraat is the Principal Investigator for a number of studies, including those evaluating immunizations in children with rheumatic diseases, the use of mesenchymal stem cells in refractory juvenile rheumatic diseases and a collaborative Canadian-Dutch project on precision medicine in JIA (UCAN CAN-DU). He also started the use of autologous stem-cell transplantation in autoimmune diseases. Dr. Wulffraat has served on a number of national and international scientific boards, including the Board of the Dutch Paediatric Rheumatology Society, the Scientific Advisory Council of the Dutch League for Rheumatology, various Program Committees of the Netherlands Organisation for Health Research and Development (ZonMw) – such as those for Translational Adult Cell Research and Priority Medicines for Children – and the European Medicines Agency (EMA) expert group for Paediatric Rheumatology.

Committees: 

  • Co-chair: Executive Committee
  • Co-chair: Research Operations Committee
  • Co-chair: Data Access Advisory Committee
  • Steering Committee

Working Group:

  • Co-chair: Budget Working Group

Susa Benseler, MD, PhD

Alberta Children’s Hospital and Cumming School of Medicine, University of Calgary

Calgary, AB, Canada

Dr. Susa Benseler is a paediatric rheumatologist and a clinician investigator at the Alberta Children’s Hospital. She serves as the Director of the Alberta Children’s Hospital Research Institute ACHRI. Dr. Benseler is a Professor of Paediatrics at the Cumming School of Medicine, University of Calgary. She obtained her MD from the University of Freiburg, a PhD in Immunology from the University of Innsbruck and the University of Freiburg, and a Masters in Clinical Epidemiology from the University of Toronto.

Her research focuses on improving outcomes of children living with inflammatory diseases. Dr. Benseler has built an international researcher and care provider partnership for children with central nervous system (CNS) inflammation.  She established the first childhood CNS vasculitis and inflammatory brain disease clinic and research program and built BrainWorks, an international childhood CNS vasculitis investigator research and education framework. She is the past Chair of the Canadian Paediatric Rheumatology Investigator (CAPRI) Network.

Activity Lead: 

  • eHealth

Committees: 

  • Executive Committee
  • Research Operations Committee
  • End User Advisory Committee
  • Co-chair: eHealth Platform Committee
  • Commercialization Advisory Committee
  • Steering Committee

Working Groups:

  • Budget Working Group
  • Co-chair: Validation Phase Working Group 1, 2 and 3
  • Co-chair: Knowledge Transfer and Exchange Working Group

Joost Swart, MD, PhD

Wilhelmina Children’s Hospital and University Medical Center Utrecht

Utrecht, Netherlands

Dr. Joost Swart is a board-certified paediatrician immunologist & rheumatologist since 2008. He works in the largest Dutch group of Paediatric Rheumatology and Immunology.

He is a member of the Paediatric Educational Committee and educates students in both the and Summa medical curricula in Utrecht and is a certified instructor for the Advanced Paediatric Life Support (APLS) course from the Advance Life Support Group. Dr. Swart trains interns, residents, and fellows in paediatrics and rheumatology at the University Medical Center Utrecht (UMCU).

His research focuses on the comparative effectiveness and safety of drugs and treatment strategies in juvenile idiopathic arthritis (JIA). He has also analyzed the effects of mesenchymal stem cells in JIA patients. Furthermore, he is a researcher and a member of the Steering Committee of PHARMAchild – an international pharmacovigiliance database with clinical data from over 9,000 JIA patients and blood and synovial samples from over 1,700 JIA patients – and UCAN CAN-DU.

He is a member of the Dutch Rheumatology Association, Paediatric Rheumatology European Society (PRES), and the Dutch Association Against Quackery. He is a council member of the Dutch Association for Paediatric Rheumatology and the Paediatric Rheumatology International Trial Organization (PRINTO).

Activity Lead: 

  • eHealth

Committees: 

  • Executive Committee
  • Research Operations Committee
  • End User Advisory Committee
  • eHealth Platform Committee
  • Steering Committee

Working Groups:

  • Budget Working Group
  • Co-chair: Validation Phase Working Group 1, 2 and 3
  • Co-chair: Analytical Framework Working Group

Bas Vastert, MD, PhD

Wilhelmina Children’s Hospital and University Medical Center Utrecht

Utrecht, Netherlands

Dr. Bas Vastert is a paediatric rheumatologist at the Wilhelmina Children’s Hospital. Dr. Vastert obtained his PhD on the mechanisms of disease and therapy in severe juvenile idiopathic arthritis in 2013. From 2017, he is Co-Lead for the Loosdregt-Vastert group in the Laboratory of Translational Immunology at the University Medical Centre Utrecht, focusing on novel therapeutic strategies in juvenile idiopathic arthritis (JIA) through the translation of cutting-edge basic science into clinical benefit.

He is currently leading a multi-centre prospective trial implementing a biomarker-driven stop strategy for recombinant IL-1RA therapy in systemic JIA in the Netherlands and setting up a clinical trial studying the potential of Nicotinamide (vitamin B3) in therapeutic strategies for non-systemic JIA.

In 2016, he organized, together with Klaus Tenbrock (Aachen, Germany), a fundraising cycling tour from Utrecht, the Netherlands to Genoa, Italy. The UCAN Ride for Arthritis has boosted international research collaboration and received major media attention in the Netherlands, Germany, Switzerland, and Italy.

Activity Lead:

  • Biomarker Program

Committees:

  • Co-chair: eCommunications Network Committee
  • Executive Committee
  • Research Operations Committee
  • Data Access Advisory Committee
  • eHealth Platform Committee
  • Steering Committee

Working Groups:

  • Discovery Phase Working Group
  • Validation Phase Working Group – Clinical Data
  • Analytical Framework Working Group

Deborah Marshall

Dr. Deborah Marshall is a health economist and health services researcher leading a programme of applied research using patient preferences, patient engagement and simulation modelling methods.

Dr. Marshall leads the health economics, socioeconomic benefits, patient preferences and patient engagement activities for several national and international research programmes (funded by CIHR and/or Genome Canada) in precision health and patient-oriented research to develop health economic tools and approaches to evaluate outcomes: 1) UCAN CAN-DU (Understanding Childhood Arthritis Network Canada-Netherlands) and 2) UCAN CURE (Precision Decisions for Childhood Arthritis personalized medicine networks in childhood arthritis combining genomic techniques, machine learning methods and simulation modelling to predict response to treatment and its associated health outcomes and economic impact; 3) SOLVE Care4Rare Canada – harnessing multi-omics to deliver innovative diagnostic care for rare genetic diseases; 4) TIGeR (Translational Implementation of Genomics for Rare diseases), partnership with Medical Genetics and Alberta Provincial Laboratory for the clinical application of genome wide sequencing; and 5) IMAGINE Strategy for Patient Oriented Research (SPOR) Chronic Disease Network (Inflammation, Microbiome, and Alimentation: Gastro-Intestinal and Neuropsychiatric Effects, CIHR SPOR) on inflammatory bowel disease and the microbiome. 6) OCEC (One Child Every Child) – Dr. Marshall is leading the Impact, Evaluation and Knowledge Mobilization Cross-cutting Accelerator of this national child health and wellness research initiative.

Deborah is the Principal Applicant of the CIHR Health Systems Impact Fellowship National Training Program – “Enhancing a Community of Practice for the Health System Impact Fellowship Program: Advancing Capacity for Sustainable & Patient-Centered Learning Health Systems across Canada” to create a community of practice towards achieving high-performing, patient-centered learning health systems across Canada. In addition, she is the former chair of both the Arthur J.E. Child Chair of Rheumatology Outcomes Research; and Canada Research Chair, Health Services and Systems Research (2008 – 2018). Deborah also holds various memberships in University of Calgary and Alberta Health Services: 1) Alberta Children’s Hospital Research Institute (ACHRI) Member as well as Scientific Director of Research and Partnership Evaluation and Impact; 2) O’Brien Institute of Public Health Member; 3) McCaig Institute of Bone and Joint Health Member; 4) Senior Scientist at Arthritis Research Canada.

She is a Founding Member of the Global Economics and Evaluation of Clinical Genomics Sequencing Working Group (GEECS). Deborah is also a founding co-investigator of the innovative Patient and Community Engagement Research (PaCER) programme at the University of Calgary which trains patients to design and conduct health research, using specific adapted methods of qualitative inquiry. She is an active member of the International Society for Pharmacoeconomics and Outcomes Research (ISPOR) as the Past President of the Board of Directors, the Chair of the Dynamic Simulation Modeling Applications in Health Care Delivery Research Task Force and as a member of the Patient Preferences Special Interest Group, the Optimization Methods Task Force and co-author of related ISPOR Task Force Reports. She has also served as a member of the Board of Directors for Health Technology Assessment International (HTAi) and is a member of the HTAi Patient Preferences Working Group. She was co-chair of the Scientific Research Committee and Board of Directors of the Arthritis Alliance of Canada (AAC), and is a member of the Scientific Advisory Committee of the Alberta PROMs & EQ-5D Research & Support Unit (APERSU)

Activity Lead:

  • Health Economics

Committee(s):

  • Executive Committee
  • Patient Preferences Advisory Committee
  • Steering Committee

Working Group(s):

  • Co-chair: Health Economics Working Group
  • Budget Working Group

Joseph Cafazzo

Dr. Joseph Cafazzo is Lead for the Centre for Global eHealth Innovation, University Health Network, a state-of-the-art research facility devoted to the evaluation and design of healthcare technology, hosting seventy researchers and staff.

As a biomedical engineer, he has spent his entire career in a hospital setting. By observing healthcare delivery from the inside, he works on ways to keep people out of hospital by creating technologies that allow for self-care at home. At the same time, Joe and his team are the biggest critics of poorly designed health technologies and their ineffectiveness. He surrounds himself with whip-smart, and passionate engineers and designers who are creating technologies that are spirited, modern, people-focused, and truly improve the patient experience.

He is an Associate Professor at the University of Toronto, in the areas of clinical engineering, human factors, and health informatics and is the recipient of the Career Scientist award by the Ontario Ministry of Health and Long Term Care.

Activity Lead: 

  • eHealth

Committee(s):

  • Co-chair: eHealth Platform Committee
  • Executive Committee
  • Steering Committee

Working Group(s):

  • Validation Phase Working Group – Clinical Data

Casper Schoemaker

Casper Schoemaker PhD is the father of a JIA patient. He represents the Dutch JIA patient and parent association in UCAN-CAN-DU. He works as a senior scientist and principal investigator at the Dutch National Institute for Public Health and the Environment. His work focuses on public health foresight, societal impact of chronic disease and patient participation in research. One day a week he works as a researcher/patient advocate at the Pediatric Rheumatology Department of the Children’s Hospital UMC Utrecht, in several projects. He will lead the Dutch JIA Priority Setting Partnership that will develop a research agenda for JIA.

Committee(s):

  • Co-chair: Patient Preference Advisory Committee
  • Executive Committee
  • Steering Committee

Working Group(s):

  • Knowledge Transfer and Exchange Working Group – Health Policy Impact Team

Dave Prowten

Dave Prowten is the parent of a child with JIA.  His daughter Sarah was diagnosed at age 2, and she is now 18, attending university.  For nearly 10 years, he worked with The Arthritis Society and the Arthritis Research Foundation, which exposed him to the research and researchers in this field.

Currently, he is the President and CEO of the Juvenile Diabetes Research Foundation in Canada and is married with two children and enjoys playing and coaching sports such as hockey.

Committee(s):

  • Data Access Advisory Committee
  • End User Advisory Committee
  • Patient Preferences Advisory Committee
  • Steering Committee

Working Group(s):

  • Knowledge Transfer and Exchange Working Group – Health Policy Impact Team