Collaborators 2019-05-09T18:26:04+00:00

Collaborators

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A

Wineke Armbrust

Wineke Armbrust is a Paediatric Rheumatologist-Immunologist for the Department of Paediatric Rheumatology and Immunology at the Beatrix Children’s Hospital, University Medical Centre Groningen. The Department is one of the centres of expertise in JIA in the Netherlands and the main focus of research is on psycho-social aspects of living with a rheumatic disease.

Committee(s):

  • Executive Committee
  • Patient Preferences Advisory Committee

Working Group(s):

  • Co-chair: Knowledge Transfer and Exchange Working Group – Intra team

B

Julie Barsalou

Working Group(s):

  • Validation Phase Working Group – Clinical Data

Michelle Batthish

Dr. Michelle Batthish is an assistant professor of Paediatrics at McMaster University and is Head of the Division of Pediatric Rheumatology at McMaster Children’s Hospital. She completed her medical training and paediatric rheumatology fellowship at the University of Toronto and The Hospital for Sick Children.  She holds a Master’s Degree in Health Services Research through the University of Toronto’s Institute of Health Policy, Management and Evaluation. Her research interests are in Quality Improvement in Pediatric Rheumatology, Patient Safety and the Morbidity and Mortality Conference.

Committee(s):

  • eCommunications Network Committee

Roberta Berard

Dr. Roberta Berard is an assistant professor of Paediatrics at the University of Western Ontario and the current chief of Paediatric Rheumatology at the Children’s Hospital, London Health Sciences Centre in London, Ontario, Canada. She holds a Master of Science in Clinical Epidemiology and Health Research and is a Fellow of the Royal College of Physicians. She has extensive experience in clinical care of patients with juvenile idiopathic arthritis and uveitis as well as research expertise in longitudinal data analysis and cohort studies.

Committee(s):

  • Data Access Advisory Committee

Working Group(s):

  • Validation Phase Working Group – Clinical Data

Lyne Bissonnette

Committee(s):

  • eCommunications Network Committee

Nicholas Blanchette

Dr. Blanchette is a paediatric rheumatologist at Trillium Health Partners in Mississauga, Ontario. He also provides care to the children of northern Ontario through the Hospital for Sick Children’s outreach clinic in Sudbury, Ontario. He completed his paediatric and rheumatology training at the University of Toronto. His clinical focus is treating children with JIA in a community setting. His interests include medical education and quality improvement and patient safety. He was awarded the University of Toronto Excellence in Community Based Teaching Award in 2015.

Committee(s):

  • eCommunications Network Committee

Gilles Boire

Gilles Boire is a graduate from Université of Montréal (BSc Chemistry) and Université de Sherbrooke (MD; MSc Clinical Sciences). He has been certified by the Royal College in Internal Medicine and Rheumatology. His postdoctoral training was completed at the Université de Sherbrooke and at Yale University. Currently, Dr. Boire is a Professor in the Division of Rheumatology for the Faculty of Medicine at the Université de Sherbrooke. He has supervised 20 rheumatology fellows and practices both adult and pediatric rheumatology.

His research interest are in the areas of autoimmunity, evaluation of the impact of research interventions on patient care, and prognostic classification of patients with recent onset inflammatory arthritis. He has authored 115 peer-reviewed publications and trained a total of 19 graduate students.

Committee(s):

  • eCommunications Network Committee

Roxana Bolaria

Dr. Roxana Bolaria is a paediatric rheumatologist and consulting paediatrician at Victoria General Hospital in Victoria, British Columbia. She obtained her Medical Degree at the University of Saskatchewan in Saskatoon and her fellowship in paediatric rheumatology at BC Children’s Hospital in Vancouver.
Dr. Bolaria currently holds positions as an adjunct faculty member at the University of Victoria as well as a Clinical Assistant professor for the department of paediatrics at the University of British Columbia. In the past, she participated in the REACCH OUT study, a pan-Canadian multicenter observational project for children with JIA.

Committee(s):

  • eCommunications Network Committee

Gouke Bonsel

Gouke Bonsel, MD, PhD, MPH is director of the Academic Collaboration Network of Maternity Care Services, Wilhelmina Children’s Hospital, Division of Woman and Baby, University Medical Center Utrecht, The Netherlands, and senior researcher of the EuroQol Research Foundation, Rotterdam the Netherlands/Dpt Public Health, Erasmus Medical Center, Rotterdam. He supports the health economics part of UCAN CAN-DU, in particular creating a bridge to the EuroQol Foundation of which the EQ-5D-5L- Youth instrument is used. In the group of Nico Wulffraat he supports the individualized use of EuroQol-5D-5L- Youth in e-Health. Being a physician by training, his personal interest is fitting advanced methods from various disciplines to research problems.

Within the EuroQol Foundation he is Chair (with Bas Janssen) of the Large Scale Applications Working Group of the Foundation. The LSA WG develops worldwide research programs where the generic EQ-5D questionnaire serves as key instrument in 3 areas: 1. Quality Registries (‘PROMs’), to measure and compare outcomes of interventions and/or performance of units/professionals, 2. Decision Aids (‘e-Health’) for individualized or personalized use of health outcome for treatment selection and monitoring, and 3.  Population Metrics (Burden of Diseases, Health Inequalities). With Bas Janssen he extended standard psychometric with new methods to compare the performance of questionnaires (see Janssen, Pharmacoeconomics 2018 Feb 22 Epub ahead of print]. Earlier research was into cross national validation (HUI, CHQ) and development (EQ5D) of youth questionnaires.

Early in his career Prof Bonsel worked as public health researcher in the area of population models and as health service researcher in the area of health technology assessment, starting in the late 1980s. He headed or co-headed studies in heart and liver transplantation, intensive care units, fertility treatments, many types of screening). Later his focus changed towards perinatal health and care, to improve perinatal health in the Netherlands, and in particular the large disparities (socio-economic, ethnic background). Currently he works on the transformation of the maternity care services (with their IT-services) of the Netherlands towards outcome oriented, efficient services.

Professor Bonsel has served on a number of national scientific boards: the Health Council, various ZONMW (The Netherland’s Organization for Health Research and Development) Program Committees, and the Burns Foundation. He is volunteer-director of the Mind2Care Foundation, which hosts and develops an evidence-based, free-of-charge antenatal care tool to support professional care for vulnerable pregnant women.

Working Group(s):

  • Health Economics Working Group

Kelly Brown

Kelly Brown is an Assistant Professor in the Division of Paediatric Rheumatology at the University of British Columbia (UBC) and the BC Children’s Hospital Research Institute in Vancouver, BC, Canada.

Her basic and translational research program in paediatric rheumatology addresses questions derived from clinical problems and considers what matters most to clinicians and patients. Research goals include improved assessment and management of childhood rheumatic disease by identification and incorporation of sensitive, subclinical (cellular/molecular) measures of inflammatory/immune activity into current clinical scores of disease activity.

Working Group(s):

  • Mentorship and Training Working Group

Alessandra Bruns

Alessandra Bruns is Assistant Professor of Rheumatology at Sherbrooke University, and a guest professor in Paediatric Rheumatology and Musculoskeletal Ultrasound at McGill University, Montreal, Quebec, Canada. She studied Medicine at Gama Filho University in Rio de Janeiro, Brazil, before training in Internal Medicine at Antônio Pedro University Hospital of the Fluminense Federal University, Rio de Janeiro. Subsequently, Professor Bruns trained in Rheumatology, specializing in Paediatric Rheumatology, and earned an MSc in Medicine at the Paulista School of Medicine, São Paulo, Brazil.  Professor Bruns gained interest in ultrasound after visiting the Institute of Rheumatology at Cochin Hospital, Paris, France in 2003, and in 2005 she has participated in ultrasound course and consultations at the Pitié-Salpétrière Hospital in Paris. She was also awarded the Charcot Scholarship for research in the Department of Rheumatology at the Bichat Hospital, Paris where she later worked as Assistant Clinical Chief. Professor Bruns has been Assistant Professor of Rheumatology and the Scientific Director of the MSK Ultrasound Courses at Sherbrooke University since 2008. Professor Bruns’ expertise in the use of ultrasound in rheumatology has taken her around the world to teach and present at congresses, and she has published numerous articles in peer-reviewed journals including the Annals of the Rheumatic Diseases. Additionally, she has served as a member of the Canadian Rheumatology Ultrasonography Group (CRUS) and Outcome Measures in Rheumatology (OMERACT) – Paediatric Group since 2009, and since 2015 she has been one of the members of the EULAR Working group Anatomy for the Image.

Committee(s):

  • eCommunications Network Committee

Working Group(s):

  • Mentorship and Training Working Group

C

David Cabral

David Cabral trained in medicine at the University of Western Australia. He did specialty training in paediatrics and rheumatology both in Western Australia, and then in Vancouver with Dr. Ross Petty. He joined the British Columbia Children’s Hospital (BCCH) rheumatology team 1992 and at that time was the paediatric co-founder of the Young Adult Rheumatic Disease (YARD) clinic, the first chronic disease transition clinic at BCCH, and a model for other paediatric programs across the country. He has been Rheumatology Division head since 2004. His vision has been to integrate research with clinical care and teaching. His diverse research interests include the study of juvenile idiopathic arthritis and paediatric vasculitis, and he has participated in, or helped establish, national and international physician networks and patient registries for the study of children with rheumatic disease. In the last 5-10 years, he helped establish a basic science research laboratory for pediatric rheumatology within the BCCH Research Institute. Since 2015 he has held the Ross Petty / Arthritis Society Chair in Paediatric Rheumatology.

Working Group(s):

  • Validation Phase Working Group – Protocol Development

Sarah Campillo

Dr. Sarah Campillo is a Paediatric Rheumatologist and Assistant Professor at the Montreal Children’s Hospital, McGill University Health Center. She is also currently in charge of the paediatric rheumatology clinic at the Shriners Hospital for Children in Montreal.

She completed her Masters in Epidemiology at McGill University in 2010.  Her clinical research interests focus on pain management, massage therapy and adherence to medications in children with juvenile idiopathic arthritis (JIA).  She is a co-investigator of several research projects on JIA.

Since 2004, she has worked closely with The Arthritis Society to develop and coordinate a yearly summer camp for children with rheumatologic diseases in the province of Quebec.

Committee(s):

  • End User Advisory Committee

Tania Cellucci

Working Group(s):

  • Validation Phase Working Group – Protocol Development
  • Knowledge Transfer and Exchange Working Group – Intra Team

Mercedes Chan

Dr. Mercedes Chan is paediatric rheumatologist and an Assistant Professor of Paediatrics at the University of Alberta, Edmonton, Canada. Dr. Chan has a strong interest in international child health and medical education, and holds a Master’s of Health Professions Education from Maastricht University. She has established collaborative teaching and research relationships in paediatric rheumatology with institutions in Canada, the United Kingdom, Thailand, South Africa and China, and is passionate about improving access to care for paediatric rheumatology patients in developing countries. Her educational research interests include establishing best practices around referral and triage; teaching musculoskeletal examination skills; and exploring professional identity formation in doctors.

Committee(s):

  • eCommunications Network Committee

Gaëlle Chédeville

Dr. Gaëlle Chédeville is an associate professor of Paediatrics at McGill University, and a paediatric rheumatologist at the Montreal Children’s Hospital, in Montreal, Quebec. She moved to Canada in 2003 after having completed her training in France.

She is interested in all aspects of paediatric rheumatology, especially in juvenile idiopathic arthritis, systemic lupus erythematosus, and vasculitis. In 2011, she started to train in musculoskeletal ultrasound and has since done multiple courses. This skill is now integrated into her practice.

Dr. Chédeville participates in different clinical research projects, including some in collaboration with CAPRI.

Working Group:

  • Validation Phase Working Group – Clinical Data

Cassie and Friends

Cassie & Friends’ mission is to transform the lives of children and families affected by Juvenile Arthritis and other rheumatic diseases. We are the only charity in Canada dedicated 100% to kids and families with over $1.7 million raised to-date for research, paediatric rheumatology programs, equipment, support services, advocacy and educational events. Our annual Family Day conference is the largest Juvenile Arthritis patient gathering in Canada (370 attendees in 2017) and our educational school program spreads awareness about arthritis in children to over 6500 students and educators each year. In 2016, we funded the Cassie + Friends Postdoctoral International Research Fellowship in Paediatric Rheumatology at BC Children’s Hospital – the first of its kind in Canada.

For more information, please visit www.cassieandfriends.ca

Committee(s):

  • End User Advisory Committee
  • Patient Preferences Advisory Committee

D

Paul Dancey

Paul Dancey is a Pediatric Rheumatologist in St. John’s, Newfoundland, Canada where he has been working since 2003, and is an Associate Professor of Pediatrics at Memorial University.  He has been an active member of the Canadian Alliance of Pediatric Rheumatology Investigators (CAPRI) since its inception and currently serves as the Secretary-Treasurer for the group.

Committee(s):

  • Data Access Advisory Committee

Karoon Danayan

Dr. Karoon Danayan is a pediatric rheumatologist at Scarborough and Rouge Hospital in Toronto. She obtained her medical degree at the University of Toronto and is a Fellow of the Royal College of Physicians of Canada. Dr. Danayan is also a lecturer in the Department of Pediatrics for the Faculty of Medicine at the University of Toronto and is an associate staff member of the division of rheumatology at the Hospital for Sick Children. Her interests include the care of children with juvenile arthritis, Kawasaki disease, systemic lupus erythematosus, dermatomyositis, mixed connective tissue disease, scleroderma, and Raynaud’s. Dr. Danayan highly values an active role of the patient in their care and wellness, and the importance of clear and effective communication between patient, physician, and caregivers.

Committee(s):

  • eCommunications Network Committee

Joke de Boer

Dr. Joke de Boer is an ophthalmologist at the University Medical Centre Utrecht in the Netherlands. She is currently the head of the ophthalmo-immunology department, co-director ophthalmology training and a medical advisor for a uveitis patient organization.

The department of ophthalmology of the University hospital Utrecht is Centre of Excellence for uveitis with approximately 5.000 patients in care. Her research interest focus on the development of personalized care for patient with chronic inflammatory eye diseases, with special interest for the paediatric patients. As an international expert, she has participated in international meetings for JIA associated Uveitis. Her memberships include International Uveitis Study Group, the European paediatric ophthalmology society, the Dutch uveitis study group and chairman of the Dutch guideline for uveitis.

Committee(s):

  • eCommunications Network Committee

Erkan Demirkaya

Dr. Demirkaya, received his medical degree pediatrics and rheumatology certification from Turkey. He also completed a Master of Science program on Autoinflammatory Diseases. Continuing to expand his research base internationally, he was awarded one-year training bursary in 2010 by the EULAR for a Clinical Fellowship in the Department of Pediatric Rheumatology and PRINTO at the University of Genova, Italy. He was granted a bursary for the Research Program for International Researchers then accepted by the National Institute of Health (NIH), National Human Genome Research Institute (NHGRI), Bethesda, Maryland-USA) in 2013 as research fellow.

Dr. Demirkaya is a Scientist at the Child Health Research Institute, Associate Scientist at the Lawson Health Research Institute and a Professor at Western University. His research interests include autoinflammatory diseases (FMF, HIDS, TRAPS, CINCA/NOMID PFAPA, and Behcet) and their genetic background, vasculitis and outcome in rheumatic diseases in children. His translational biology research program in autoinflammation, which includes multinational-multidisciplinary collaborative projects with multiple members of the BJI, is focused on investigating the mechanisms, genetic and pathobiology of autoinflammatory diseases, development and progression to identify new therapeutic targets. He recently joined the Robarts institute as an associate scientist and set up research laboratory at the same institute.

Sytze de Roock

Sytze de Roock was trained as a biologist at the University of Utrecht. He obtained his PhD at Wilhelmina Children’s Hospital, UMCU, focusing on the development of the human adaptive immune system in the first years of life. After this he focused his research on Juvenile Idiopathic Arthritis.

He has studied pathology of systemic JIA with a main interest in the role of phagocytes. He has investigated (phagocyte related) biomarkers that could predict disease progression and therapy responses in international projects. In close collaboration with clinicians he analyzes weekly updated clinical datasets for predictive parameters and to integrate and translate lab findings into clinics.

Working Group(s):

    • Discovery Phase Working Group
    • Validation Phase Working Group – BioBank Data

Ciaran Duffy

Ciarán M. Duffy MB, BCh, MSc, FRCPC, FRCPI

Professor and Chairman, Department of Pediatrics

Chief of Pediatrics, Children’s Hospital of Eastern Ontario

Pediatric Rheumatologist and Clinical Epidemiologist

Dr. Duffy graduated from medical school at University College Dublin in 1979 and then completed a pediatrics residency at The Children’s Hospital of Western Ontario, London; a fellowship in pediatric rheumatology at The Hospital for Sick Children, Toronto; and a Master’s degree in Clinical Epidemiology at McMaster University, Hamilton.   He practiced for more than 20 years in Montreal and was Professor and Associate Chairman of the Department of Pediatrics at McGill University and Director of the Division of Rheumatology and Associate Pediatrician-in-Chief at The Montreal Children’s Hospital. He relocated to Ottawa in April 2011 to assume the role of Professor and Chairman, Department of Pediatrics, University of Ottawa, and Chief of Pediatrics, Children’s Hospital of Eastern Ontario. The department has grown to become a very strong clinical and academic department under his leadership.  Dr. Duffy is an active researcher and educator who holds large grants from CIHR.  His clinical and research focus is on pediatric rheumatology with a particular interest in juvenile idiopathic arthritis (JIA).   He leads large cohort studies in JIA – REACCH OUT and LEAP – nationally, has published extensively in this area with over 120 peer-reviewed publications, 20 book chapters, and a large number of presentations.  He is a founding member of the Canadian Alliance of Pediatric Rheumatology Investigators and has served on a large number of national and international bodies.

Committee(s):

  • Privacy and Ethics Advisory Committee

Working Group(s):

  • Validation Phase Working Group – Protocol Development

Karen Watanabe Duffy

Dr. Karen Watanabe Duffy graduated from medical school at the University of Western Ontario in 1986. She completed an Internal Medicine residency at the University of Toronto in 1989, followed by a Rheumatology fellowship at the University of Toronto in 1990 and McGill University in Montreal in 1991. She was a rheumatologist at Montreal Children’s Hospital and McGill University Health Centre for 19 years and their Pediatric Rheumatology training program director between 2007 and 2011. In August 2012, she relocated to the Children’s Hospital of Eastern Ontario (CHEO) and the University of Ottawa. She serves on the CHEO EPIC (EHR) leadership team and is an EPIC physician champion, dedicated to its optimization for fellow providers. Dr. Watanabe Duffy’s clinical research focus is in the area of juvenile idiopathic arthritis (JIA) and outcomes, JIA-related uveitis, knowledge translation, and transition of youth with rheumatic diseases to adult care.

Working Group:

  • Validation Phase Working Group – Clinical data

E

Janet Ellsworth

Dr. Janet Ellsworth, MD, FRCP(C) is a pediatric rheumatologist at the Stollery Children’s Hospital and Glenrose Hospital, Head of the Division of Pediatric Rheumatology and Professor of Pediatrics at the University of Alberta. She was the first pediatric rheumatologist to practice in Alberta, starting in 1986. She is involved in medical education at the undergraduate, postgraduate and CME levels. She also is engaged in clinical research in collaboration with the Canadian Alliance of Pediatric Rheumatology Investigators.

Committee(s):

  • End User Advisory Committee

F

Brian Feldman

Dr. Brian Feldman is Professor of Pediatrics, Medicine, Health Policy Management and Evaluation at the University of Toronto. He is Division Head of Rheumatology at The Hospital for Sick Children.

Dr. Feldman’s focus has been in clinical research in the field of childhood rheumatic disease. Recognizing the challenges involved in the study of rare disease Dr. Feldman has worked to improve the tools available to assist in this research. Dr. Feldman has made contributions to the understanding of the prognosis and treatment of juvenile dermatomyositis, the course and outcome of systemic-onset juvenile idiopathic arthritis and juvenile SLE, and the role of fitness and exercise in childhood chronic diseases including arthritis and fibromyalgia.

Working Group(s):

  • Validation Phase Working Group – Clinical Data
  • Validation Phase Working Group – Protocol Development
  • Health Economics Working Group

Marvin Fritzler

Dr. Marvin Fritzler received his PhD in 1971 and MD in 1974 from the University of Calgary. In 1976, he went to The Scripps Research Institute in La Jolla, CA in and then to the University of Colorado as a research fellow under the mentorship of Dr. Eng M. Tan. After the post-doctoral fellowship at the University of Colorado, he joined the University of Calgary in 1978 where he is currently Professor in the Cumming School of Medicine. His clinical and research activity is devoted to biomarker identification and autoantibody testing.  From 2001 to 2015, he served as Chair of the Alberta Research and Innovation Authority, a strategic policy advisory board of the Government of Alberta. He has published over 420 peer-reviewed manuscripts and has over 11,000 citations. He has received numerous awards including most recently Master of the American College of Rheumatology (2013), Order of the University of Calgary (2014), and Carl R Jolliff Award for Lifetime Achievement in Clinical and Diagnostic Immunology from the American Association of Clinical Chemistry (2016). He is the Director of Mitogen International Advanced Diagnostics at the University of Calgary.

Committee(s):

  • Co-chair: Commercialization Advisory Committee
  • Executive Committee

G

Kerstin Gerhold

Dr. Kerstin Gerhold cared for children with immunologic, chronic respiratory and rheumatic diseases, and chronic pain disorders for more than 15 years at the University Hospital Charité in Berlin. She moved to Winnipeg in 2014 and became Section Head of Pediatric Rheumatology, Department of Pediatrics and Child Health, and Associate Professor of Pediatrics at the University of Manitoba. She is the current lead of the WRHA Child Health Initiative “Every Child, Every Time” to improve children’s pain management in the province, and has been building a service for pediatric patients with chronic pain. Her early research included basic immunologic science. Now, with a master degree in Epidemiology she has become more focused on clinical and epidemiologic studies on chronic pain with or without an underlying (rheumatologic) condition.

Working Group(s):

  • Validation Phase Working Group – Clinical Data

Tommy Gerschman

Dr. Tommy Gerschman is a pediatric rheumatologist in a community practice in Burnaby, BC. He also participates in outreach clinics to Surrey, BC with the team from BC Children’s Hospital. Dr. Gerschman completed his pediatric rheumatology training at UBC. Subsequently, he obtained his MSc Sports Medicine, Exercise, and Health from University College London (UK). He has an interest in promoting physical activity and exercise in children with rheumatic disease. Dr. Gerschman recently spent six years working at Alberta Children’s Hospital in Calgary, AB. While in Calgary, he developed a unique multidisciplinary clinic for children with JIA who are athletes, to explore the unique challenges this population often face.

Committee(s):

  • End User Advisory Committee

Working Group(s):

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

Jaime Guzman

Dr. Jaime Guzman is a physician and clinical epidemiologist with specialist training in pediatric rheumatology and physical medicine and rehabilitation.  As a researcher, Dr. Guzman has published over 70 peer-reviewed scientific papers and participated on more than 20 funded research projects.  Dr. Guzman’s research has included seminal papers on the rehabilitation of chronic low back pain; the epidemiology and management of neck pain; and translational research on autoimmune anemias, Kawasaki disease and juvenile dermatomyositis.  Since 2011 his research focus is the course and prognosis of children with juvenile arthritis, including pivotal papers on patient outcomes with contemporary treatments, the risk and nature of flares, and a just accepted paper describing a method to estimate the individual chance of a severe disease course for each child with arthritis.

Committee(s):

  • End User Advisory Committee*
  • Executive Committee

Working Group(s):

  • Validation Phase Working Group – Clinical Data

(*Individual is a co-chair of the committee or working group)

H

Elie Haddad

Working Group(s):

  • Discovery Phase Working Group

Liane Heale

Dr. Liane Heale is a pediatric rheumatologist working at Royal University Hospital in Saskatoon, Saskatchewan. She completed her medical training at the University of Western Ontario and her pediatric residency and pediatric rheumatology subspecialty training at the University of Toronto.

Her main research interest is examining and promoting physical activity and healthy lifestyle choices to enhance the lives of children with rheumatic disease.

Petra Hissink Mulle

Dr. Petra Hissink Muller is a Pediatric Rheumatologist at the Leiden University Medical Center in the Netherlands. After magna cum laude master graduation from Medicine at Katholic University of Leuven in Belgium, she finished her medical education cum laude at the Leiden University Medical Center. She specialized in Pediatrics followed by Pediatric Rheumatology in Leiden under guidance of Dr. Rebecca ten Cate.

She coordinated the Best for Kids study, a multicenter randomized single blinded three armed strategy study in Juvenile Idiopathic Arthritis. This study is the basis for her thesis which she is currently preparing.

Since 2015 she works part time at the Erasmus Sophia Children’s hospital in Rotterdam.

Committee(s):

  • Privacy and Ethics Advisory Committee

Working Group(s):

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

Esther Hoppenreijs

Esther Hoppenreijs works as a pediatric rheumatologist at the Radboudumc Amalia Kinderziekenhuis in Nijmegen and in the pediatric musculoskeletal center of the Sint Maartenskliniek located in Boxmeer, both in the Netherlands. Patients with systemic autoimmune or autoinflammatory diseases visit the Radboudumc and patients with juvenile idiopathic arthritis are mostly consulted in the St Maartenskliniek.

In the Sint Maartenskliniek there is a pediatric musculoskeletal center were the pediatric rheumalogists work together with pediatric orthopedists and rehabilitation specialists.

In the UCAN CAN-DU project she would like to focus on biological therapy Stop strategies in children with juvenile idiopathic arthritis.

Working Group(s):

  • Health Economics Working Group

Kristen Houghton

Kristin Houghton is a pediatric rheumatologist and sports medicine specialist. She is actively involved in education and research. Currently, she is the director of the UBC Pediatric Rheumatology training program and is involved in the education of medical students and medical residents.

Her research interests include physical activity and exercise in children with chronic illness. She is involved in advocacy and health promotion and the Exercise is Medicine initiative.

Working Group(s):

  • Mentorship and Training Working Group

Adam Huber

Adam Huber has been a pediatric rheumatologist at the IWK Health Centre in Halifax since 2000, after having finished his training at the Hospital for Sick Children in Toronto.

He is particularly interested in the assessment and outcomes of children with rheumatic illnesses as well as in finding better ways to treat them. He also has an interest in research ethics, and has been co-chair of the IWK Health Centre Research Ethics Board for the last 13 years.

Committee(s):

  • Co-chair: Privacy and Ethics Advisory Committee
  • Executive Committee

Clare Hutchinson

Clare Hutchinson is a pediatric rheumatologist as well as a medical student preceptor and supervisor at the North York General Hospital. Dr. Hutchinson is a part of the faculty development group for the Longitudinal Integrated Clerkship (LInC) program and has received the 2017 Helen P. Batty Award for Excellence and Achievement in Faculty Development in the category of Innovation in Program Development and Design. She is currently the lead of the LlnC program at the North York General Hospital. In addition, she was also nominated for the 2017 University of Toronto Excellence in Community-Based Teaching Award (Community Hospital). Her interests include medical education innovation, faculty development, community-based teaching, and community medicine.

Committee(s):

  • eCommunications Network Committee

I

J

Mehul Jariwala

Dr. Mehul Jariwala is a Lecturer, with the University of Saskatoon, Department of Pediatrics, and practices as a Pediatric Rheumatologist at the Royal University Hospital, Saskatoon, Saskatchewan since 2016. Dr.Jariwala is an international trained physician completing his medical school in Mumbai in 2007 and went on to his pediatric residency until 2010. He trained in pediatric rheumatology at New Delhi, India and later joined the pediatric rheumatology fellowship at SickKids in Toronto. His research interest includes juvenile Spondyloarthritis, Seropositive JIA and auto-inflammatory disorders.

Working Group(s):

  • Validation Phase Working Group – Protocol Development

Nicole Johnson

Dr. Nicole Johnson is a Clinical Assistant Professor at the University of Calgary, Alberta, Canada. She is a clinical pediatric rheumatologist practicing at the Alberta Children’s Hospital in Calgary, since 2004. Dr. Johnson received her university education at Canadian Institutions including McGill, McMaster, Queen’s and the University of Toronto.

Dr. Johnson has been an advocate for community awareness for children with rheumatic diseases. She has volunteered her time to many media appearances to highlight childhood arthritis. In addition, she has a special interest on the subject of transitioning young adults with chronic rheumatic illnesses to adult health care systems.

She has contributed to medical education both at the undergraduate and postgraduate level and has been a coordinator for medical student and resident electives for pediatric rheumatology at her institution. She is involved in Pediatric Clerkship as an Evaluation Coordinator for the Cumming School of Medicine at the University of Calgary. She lectures at the medical school both at undergraduate and post graduate level. She is currently a national examiner for the Pediatric Rheumatology Royal College of Physicians and Surgeons of Canada.  She also participates in national and international clinical research of childhood rheumatic diseases.

Working Group(s):

  • Knowledge Transfer and Exchange Working Group – Intra Team

Roman Jurencak

Dr. Jurencak received his medical degree from Masaryk University in the Czech Republic. He then undertook his training in Pediatric Medicine at Palacky University followed by further training in Pediatric Rheumatology at the Hospital for Sick Children at the University of Toronto. He joined the Division of Pediatric Rheumatology at the University of Ottawa as a full time Rheumatologist and an Assistant Professor in 2008.
Dr. Jurencak’s main academic interest is in medical education, in particular Problem Based Learning and Case Based Learning. He completed the Healthcare Education Scholars Program at the Academy for Innovation in Medical Education, University of Ottawa in 2011. Dr. Jurencak’s research focus is on Juvenile Idiopathic Arthritis and he collaborated on several important studies in this field.

K

Sylvia Kamphuis

Committee(s):

  • Data Access Advisory Committee

Working Group(s):

  • Validation Phase Working Group – Protocol Development

Nienke Klomp

ReumaNederland

Committee(s):

End User Advisory Committee

Taco Kuijpers

Taco Kuijpers was trained in the Netherlands at the University of Amsterdam, which resulted in a cum laude doctorate, obtained in 1992 with a thesis entitled “Neutrophil adhesion and diapedesis: movements in the dark toward the end of the tunnel”. He performed a post-doc training period at the Dept of Hematology in Seattle, Washington USA, prior to his traning in Pediatrics and Clinical Immunology.

Prof. Kuijpers is head of the department of Pediatric Hematology, Immunology, Rheumatology and Infectious disease at the Emma Children’s Hospital of the Academic Medical Center (AMC) in Amsterdam since 2002.

His main interests are in innate immunity (among which are phagocyte disorders such as Chronic Granulomatous Disease) and adaptive defects causing primary immunodeficiencies or immune dysregulation (among which are cellular defects).

He has long-standing research lines in IgG, complement and their receptors, particularly in infectious disease, immunity and (auto)inflammation including fever syndromes and various forms of vasculitis. Apart from understanding mechanisms of disease and immunopathology, his research and biomarker discovery is of use to generate new tests for diagnosis and monitoring of infectious and/or inflammatory disease.

Committee(s):

  • Commercialization Advisory Committee

Working Group(s):

  • Discovery Phase Working Group

L

Bianca Lang

Working Group(s):

  • Validation Phase Working Group – Clinical Data
  • Health Economics Working Group

Ronald Laxer

Dr. Ronald Laxer’s major interests include juvenile idiopathic arthritis, autoinflammatory diseases, chronic recurrent multifocal osteomyelitis, and localized scleroderma.

Committee:

  • Privacy and Ethics Advisory Committee

Working Groups:

  • Validation Phase Working Group – Protocol Development

Claire LeBlanc

Dr. Claire LeBlanc is board certified as a pediatrician, pediatric rheumatologist and sport medicine physician who is based at the Montreal Children’s Hospital (MCH). She is currently an associate professor of pediatrics at McGill University and has recently helped create and teach new curriculum for the medical school movement block. She also teaches MSK anatomy and physical examination skills in the core curriculum for rheumatology residents.

She is the outgoing chair of the Canadian Pediatric Society (CPS) Healthy Active Living and Sport Medicine Committee and was the CPS liaison to the American Academy of Pediatrics (AAP) council on sport medicine and fitness. Through these roles she contributed to many position papers promoting healthy active living and safe sport participation.

Dr. LeBlanc has written chapters on a variety of sport medicine-related topics in textbooks such as Care of the Young Athlete, Pediatric Orthopedics for Primary Care, Textbook of Pediatric Rheumatology 7th Edition, Textbook of Pediatric Care, and School Health: Policy & Practice Seventh Edition.

Committee(s):

  • Co-chair: Patient Preferences Advisory Committee
  • Executive Committee

Working Group(s):

  • Health Economics Working Group

Elizabeth Legger

Elizabeth Legger is Pediatric Rheumatologist- Immunologist of the Department of Pediatric Rheumatology and Immunology, of the Beatrix Children Hospital University Medical Center Groningen. The Department is one of the centres of expertise in JIA in The Netherlands.

Her main interests are auto inflammatory diseases.

Working Group(s):

  • Validation Phase Working Group – Biobank Data
  • Mentorship and Training Working Group

Otto Lelieveld

Otto Lelieveld is a physiotherapist working at the University Medical Center Groningen, Center for Rehabilitation and the Beatrix Children’s Hospital in the Netherlands.

He has extensive expertise in pediatric rheumatic conditions. His PhD thesis (2010) focuses on physical activity and fitness in Juvenile Arthritis. He works together with Wineke Armbrust, pediatric rheumatologist at Beatrix Children’s Hospital. Together they have jointly developed the Rheumates@work program, an interactive web based program to encourage physical activity in children with arthritis.

He is an avid cycler, and in 2016 he joined the UCAN Ride for Arthritis cycling event in which the group biked from Utrecht to Groningen.

Committee(s):

  • Patient Preferences Advisory Committee

Ingrid Lether

ReumaNederland

Committee(s):

  • End User Advisory Committee

Deborah Levy

Dr. Deborah Levy is the Clinical Director, Division of Rheumatology at the Hospital for Sick Children (“SickKids”) in Toronto and an Associate Professor of Pediatrics at the University of Toronto.  Dr. Levy’s interests are broad; however, she is co-director of the Lupus clinic at SickKids and her research primarily focuses on the long term medical and psychosocial outcomes of childhood-onset Lupus. She has participated as a collaborator on multiple research projects through CAPRI.  She is also interested in alternate models of care for children with arthritis, and is working with advanced practitioners to develop a new network of pediatric rheumatology providers for children in underserved communities within Ontario.  Advocacy work as the current Chair of the Pediatric Committee of the Canadian Rheumatology Association and as an executive board member of the Ontario Rheumatology Association has helped to improve access to drugs for pediatric rheumatology patients.  Dr. Levy has lived, trained and worked in both the US and Canada.

Working Group(s):

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

Lily Lim

Dr. Lily SH Lim is a pediatric rheumatologist at the Children’s Hospital of Manitoba and clinician-scientist at the Children’s Hospital Research Institute of Manitoba. She is a PhD trained epidemiologist with expertise in longitudinal study designs and longitudinal data analysis. She currently works on adapting innovative alternative longitudinal study designs for higher research efficiency. Her clinical research interests are in the adulthood outcomes of childhood-onset chronic rheumatic diseases, in particular systemic lupus erythematosus. She is especially interested in describing outcomes of patients using longitudinal disease trajectories and identifying factors that predict changes in individuals’ disease trajectories. She has recently done this in a childhood-onset systemic lupus erythematosus disease cohort that spanned 25 years, describing disease outcomes trajectories in these patients for the first time in literature. She continues to focus on this area with ongoing national collaborative efforts.

Working Group(s):

  • Validation Phase Working Group – Protocol Development
  • Analytical Framework Working Group

Nadia Luca

Dr. Nadia Luca is a Clinical Assistant Professor with the University of Calgary Department of Medicine and practices as a Paediatric Rheumatologist at the Alberta Children’s Hospital, Calgary, Alberta. Dr. Luca completed her medical degree in 2006, and went on to paediatric residency and fellowship in paediatric rheumatology at The Hospital for Sick Children (SickKids) in Toronto. She also holds an MSc in Health Services Research and Clinical Epidemiology. She is a mentor, lecturer, and preceptor to students, and residents as well as undergraduate and graduate students. She has been recognized for her contributions, with various awards and grants to further her research and studies. Dr. Luca’s research involves measuring health outcomes in paediatric rheumatic diseases, with a focus on localized scleroderma and transition of youth to adult care.

Working Group:

  • Knowledge Transfer and Exchange Working Group

M

Paavi Miettunen

Dr. Paivi Miettunen is a paediatric rheumatologist at Alberta Children’s Hospital, and an associate professor at the University of Calgary, Canada. She has been involved in local, national and international research focused on bone health in pediatric leukemia (osteonecrosis), treatment and imaging of chronic recurrent multifocal osteomyelitis (CRMO), and treatment of macrophage activation syndrome (MAS). As the Chair of the Visual Arts and Medicine program, another area of research she is interested in is linking visual arts with medicine, which includes an interactive program to teach anatomy through hands-on sculpting.

Marie-Paule Morin

Committee(s):

  • End User Advisory Committee

Kimberly Morishita

Dr. Kimberly Morishita is a Pediatric Rheumatologist at BC Children’s Hospital and clinical assistant professor of Pediatrics at the University of British Columbia. She holds a Master of Health Sciences Degree and is a graduate of the Clinical Investigator Program at UBC. Her research interests are in pediatric vasculitis, uveitis and translational medicine. She has a particular interest in outcomes research in ANCA associated vasculitis.

Committee(s):

  • eCommunications Network Committee

Christeena and Ava Morgan

Ava Morgan is 11 years old and born on March 27th, 2006 in Amsterdam, The Netherlands.  When Ava was 7 she would complain of her knees hurting and had a lot swelling in the knees.  We took her in for her annual checkup and the doctor started running routine bloodwork and tests that showed some markers suggested that she should be sent to a Rheumatogist just in case.  Ava was then referred to Dr. Susa Benseler at Alberta Children’s hospital, she was diagnosed with Juvenile Arthritis that then quite quickly progressed into Psoriatic Arthritis just a couple months after and having troubles walking and in a lot of pain.  Ava is a very energetic child that loves to play sports; Hockey being one of her true passions.  Her gym teachers said she is an absolute pleasure and goes above and beyond when it comes to any activity.  Even though she loves to be active it’s hard finding the perfect balance for her when her knees and ankles give her so much pain and swelling.  Pain or swelling doesn’t stop Ava she just plugs away, takes extra medicine and plays through the pain because in her eyes she just wants to be normal and play hockey.  Since being diagnosed back in 2012 she has been on 3 biologics and had multiple cortisone steroid injections in the knees and ankles.  In December Ava was hospitalized for 16 days with a reaction to one of these biologics.  Ava went into the hospital with ulcers that quickly spread from her mouth, down her neck and after a scope they found multiple erosions and ulcers on her small intestines.  Ava was very sick after multiple tests the doctors finally figured out it was a reaction to one of her biologics she had just recently started on.  After finding out the results they were able to give her the correct medicine, high doses of steroids, IV’s, feeding tubes and slowly get her eating again and regaining some of her energy.  Tomorrow she is starting on an infusion a new biologic Remacaid Infusion.  Ava is scheduled for knee surgery on March 1.  The doctors are confident with the knee surgery and her new infusion every 6 weeks they can get Ava back on track.  Ava is hoping this spring after physio, rehab and doctor approval she can get back to playing hockey and wants to get back to playing soccer again.

Christeena Morgan is 41 years old and born on March 10, 1976.  She worked full-time in the oil and gas industry as an accountant for 17 years; after having her third child she decided to stay home with her 3 children; Ava is 11 years old, Kiana is 8 years old and Liam is 3 years old. She was diagnosed with Psoriatic Arthritis when she was 30 years old.  She had inflammation in my hands, feet, hips and knees and shoulders.  In prior years, even into her childhood years she had dry patches all over my body and scalp but always got diagnosed with dry skin.  She has now been on 4 biologics but trial and error, the doctors have found a biologic Remacaid that I have been working for the last 6 years.  Just recently she has gotten back into a routine, working out 3 to 4 times a week doing various cardio and yoga classes.  Being active helps her keep my body healthy and have more energy to carry on with my day.  She can definitely tell the difference when she is active versus not active.

Committee(s):

  • End User Advisory Committee

N

O

P

Ross Petty

Dr. Ross Petty was educated at the University of Saskatchewan, Saskatoon, and completed a residency in pediatrics at the University of Michigan. After a fellowship in Pediatric Rheumatology with Dr. Donita Sullivan and Dr. James Cassidy in Ann Arbor, he studied at the University of London with Professor Michael Steward, receiving a PhD in Immunology. He has been on the faculties of the Departments of Pediatrics at the University of Michigan, University of Manitoba and University of British Columbia, where he is currently Professor Emeritus, and a member of the Division of Rheumatology at British Columbia’s Children’s Hospital.

Dr. Petty established programs in pediatric rheumatology at the University of Manitoba in 1976 and the University of British Columbia in 1979. He and his colleagues have supervised the training of almost fifty pediatric rheumatologists who now lead programs throughout the world. With colleagues, Dr. Petty has written 225 original papers and book chapters, and co-edited the Textbook of Pediatric Rheumatology, now in its 7th edition. He has been a visiting lecturer on every continent and has an interest in children with rheumatic diseases in the developing world.

Dr. Petty is a fellow of the American College of Rheumatology, the American Academy of Pediatrics and the Royal College of Physicians and Surgeons of Canada. He has been the recipient of Distinguished Rheumatologist Awards of the Canadian Rheumatology Association, and the American College of Rheumatology, the Ross Award of the Canadian Pediatric Society, and the James T Cassidy Award of the American Academy of Pediatrics. He is a Master of the American College of Rheumatology and in 2008 was appointed a Member of the Order of Canada. He is a recipient of the Queen Elizabeth II Diamond Jubilee medal. In June 2018 he was awarded the honorary degree DSc from the University of Saskatchewan.

Committee(s):

  • Privacy and Ethics Committee

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

Working Group(s):

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

Q

R

Alisa Rachlis

Dr. Alisa Rachlis completed her medical degree at the University of Toronto, followed by a Paediatric residency and Pediatric Rheumatology fellowship at The Hospital for Sick Children (SickKids) in Toronto. In addition to her clinics at Kindecare, Dr. Rachlis works at the Paediatric Rheumatology clinics at The Hospital for Sick Children (SickKids) and Rouge Valley Centenary Hospital.

Dr. Rachlis’ academic interests include juvenile arthritis, connective tissue disorders, and musculoskeletal pain. She enjoys teaching medical students, residents, and community paediatricians.

Committee:

  • eCommunications Network Committee

Suzanne Ramsey

Dr. Suzanne Ramsey is Head of Pediatric Rheumatology at the IWK Health Centre in Halifax, NS, Canada where she is Associate Professor of Pediatrics and Medicine (Rheumatology). She began her career in pediatrics on the East coast at Dalhousie University, then was very fortunate to follow her husband to the West coast to UBC where she finished her training in Pediatrics and Pediatric Rheumatology.

She qualified with the Royal College in 1999 and moved to Halifax where her academic practice includes patients representing all aspects of pediatric rheumatology including JIA, CTD, Uveitis, and auto-inflammatory syndromes.

Her other interests include quality improvement, travel with her family and riding her horse.

Committee(s):

  • eCommunications Network Committee

Alan Rosenberg

Dr. Alan Rosenberg is a professor of Pediatrics and current Head of the Division of Rheumatology, Department of Pediatrics at the University of Saskatchewan, Canada. He directs Pediatric Rheumatology clinical service and has maintained a translational research program as the Director of the Pediatric Rheumatic Disease Research Laboratory.

Dr. Rosenberg’s research activities include leading and participating in transdisciplinary studies that are showing how genetic, lifestyle and environmental factors interact to influence the occurrence and outcomes of childhood rheumatic diseases.  He leads and participates in collaborative research that contribute to characterizing the utility of biomarker profiling in childhood arthritis, studying  how inflammation occurring during pregnancy can influence the occurrence of future inflammatory-mediated diseases,  determining the pathogenesis of uveitis associated with childhood arthritis, characterizing novel inflammatory pain pathways, and developing new methods to image growing joints using synchrotron-based technologies.

Committee(s):

  • Privacy and Ethics Advisory Committee*
  • Executive Committee
  • Data Access Advisory Committee

Working Group(s):

  • Discovery Phase Working Group
  • Mentorship and Training Working Group

(*Individual is a co-chair of the committee or working group)

Johannes Roth

Dr. Johannes Roth, MD PhD FRCPC RhMSUS

Professor of Pediatrics, University of Ottawa

Chief, Division of Pediatric Dermatology and Rheumatology, Children’s Hospital of Eastern Ontario (CHEO)

Dr. Johannes Roth has been a pediatric rheumatologist at the Children’s Hospital of Eastern Ontario (CHEO) since 2007. He is a Professor of Pediatrics at the University of Ottawa and the Chief of the Division of Rheumatology at CHEO. He is a very active member on various committees and professional societies nationally and internationally with a focus on musculoskeletal ultrasound. Dr. Roth is a co-founder and former President of the Canadian Rheumatology Ultrasound Society. He is leading several national and international projects on the standardization and validation of pediatric musculoskeletal ultrasound.

Committee(s):

Data Access Advisory Committee

Evelyn Rozenblyum

Evelyn Rozenblyum is a pediatric rheumatologist who trained at the University of Toronto at SickKids for her fellowship. She has worked at Alberta Children’s Hospital, and McMaster Children’s Hospital. She now has two active posts at SickKids in Toronto and Royal University Hospital in Saskatoon.

Her research interests include Transition from pediatric to adult rheumatic care, cytomegalovirus in lupus, neonatal lupus, and educational research through the Resident’s Guide to Pediatric Rheumatology Mobile Application.

Evelyn is looking forward to being a part of UCAN CAN-DU.

Committee(s):

  • eCommunications Network Committee

Dax Rumsey

Dax G. Rumsey, MD, FRCP(C) is a pediatric rheumatologist and assistant professor at the Stollery Children’s Hospital and University of Alberta in Edmonton, AB, Canada.  His primary research interest is in the diagnosis, management, quality of life, and outcomes of patients with juvenile spondyloarthritis (including enthesitis-related arthritis (ERA), juvenile ankylosing spondylitis, and related conditions).

Working Group(s):

  • Validation Phase Working Group – Protocol Development

S

Ellen Schatorjé

Ellen Schatorjé is currently working as a pediatric rheumatology fellow in the St Maartenskliniek and also in the Radboudumc Amalia Kinderziekenhuis, both situated near/in Nijmegen, the Netherlands. Most patients with juvenile idiopathic arthritis are consulted in the St Maartenskliniek.

During her training as a pediatric rheumatologist she also worked in the Wilhelmina Kinderziekenhuis in Utrecht. She will finish her fellowship in March 2018.  Her area of interest in the UCAN CAN-DU project is the development of strategies to stop biologic therapies in children with juvenile idiopathic arthritis.

Committee(s):

  • Patient Preferences Advisory Committee

Working Group(s):

  • Validation Phase Working Group – Protocol Development

Heinrike Schmeling

Dr. Heinrike Schmeling is an Associate Professor with the University of Calgary, as well as a Pediatric Rheumatologist, currently practicing at the Alberta Children’s Hospital in Calgary, Alberta. She obtained her PhD in 2002, at Humboldt University, in Germany, and completed her Medical Specialist in pediatric and adolescent medicine in 2005. Since the beginning of her first academic position at the Alberta Children’s Hospital/University of Calgary in 2009, Dr. Schmeling’s clinical and research activities is focused on personalized medicine and outcome in childhood arthritis and Juvenile Dermatomyositis. She leads various projects in this area, and is involved in many national and international research collaborations. Dr. Schmeling is also the site principle investigator on multiple international clinical trials in childhood arthritis. She has published over 40 peer reviewed papers and secured multiple funding opportunities for research.

Working Group(s):

  • Validation Phase Working Group – Protocol development

Rayfel Schneider

Rayfel Schneider is a Paediatric Rheumatologist at the Hospital for Sick Children, a Professor in the Department of Paediatrics at the University of Toronto and the Associate Chair of the Department for Education. He was formerly Division Chief and Subspecialty Program Director of the Division of Paediatric Rheumatology.

His major clinical focus is juvenile idiopathic arthritis with a specific interest in systemic JIA and one it’s most serious complications, macrophage activation syndrome. His research has focused on prognosis, outcome and clinical treatment trials for these patients as well as the development of treatment guidelines.

Committee(s):

  • Data Access Advisory Committee

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

Working Group(s):

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

Dieneke Schonenberg

Dieneke Schonenberg-Meinema is a pediatric rheumatologist and immunologist at the Emma Children’s Hospital in AMC Hospital Amsterdam since 2015. Her main focus is clinical work at the outpatient clinic as well as her personal interest in SLE/MCTD. Dr. Schonenberg is also part of a research team for MRI-imaging in JIA.

Recently, she has started working with the LuCa-study which focusses on capillaroscopy findings in childhood-onset SLE.

In addition, another area of research includes therapeutic drug monitoring of biologic therapies in JIA. She enjoys collaborating closely with national and international centers to integrate knowledge and patient data and continuously improve patient care in the field of rheumatic diseases.

Working Group(s):

  • Validation Phase Working Group – Clinical Data
  • Mentorship and Training Working Group

Rosie Scuccimarri

Dr. Rosie Scuccimarri completed her training in Pediatric Rheumatology in 2000 and is currently an Associate Professor at the Montreal Children’s Hospital / McGill University Hospital Centre, McGill University. She is also the Pediatric Rheumatology program director since 2011. Her current research interests include Juvenile Idiopathic Arthritis, Kawasaki Disease, Autoinflammatory Diseases and Pediatric Rheumatology Global Health. She is an active member of the Canadian Alliance of Pediatric Rheumatology Investigators (CAPRI) and Childhood Arthritis and Rheumatology Research Alliance (CARRA). She is the past-chair of the Pediatric Committee of the Canadian Rheumatology Association (CRA) and previous board member of the CRA.

Working Group(s):

  • Mentorship and Training Working Group

Gordon Soon

Dr. Gordon Soon is a community-based pediatric rheumatologist at North York General Hospital and St. Joseph’s Health Centre in Toronto and also provides care in the outreach clinic at Health Sciences North in Sudbury. He is an associate staff member and the lead for continuing education in the Division of Rheumatology at The Hospital for Sick Children. He has a particular interest in the identification and treatment of pediatric rheumatic diseases for families that may not have regular access to larger academic centres and is the UCAN CAN-DU site lead for community-based practices in Toronto.

Committee(s):

  • End User Advisory Committee

Lynn R. Spiegel MD, FRCPC

Lynn Spiegel is a pediatric rheumatologist at the Hospital for Sick Children in Toronto and a fellow of the Royal College of Physicians and Surgeons of Canada.

Dr. Spiegel has been involved in local, national and international research to develop programs and tools to support youth in their transition from the pediatric to the adult health care system. She is also interested in TMJ arthritis and has collaborated in local and international research focused on improving diagnosis and management of this condition. In addition, she has contributed to research projects looking at the connections between sleep and fatigue to pain, novel pain therapies, and development of a new standardized tool for pain assessment in patients with rheumatic conditions.  She also collaborates in local, national and international JIA research initiatives, looking at the biologic basis of disease, predictors of disease activity, outcome measures, and pharmacologic and non-pharmacologic therapies.

Committee(s):

  • Patient Preference Advisory Committee
  • Privacy and Ethics Advisory Committee

Rebeka Stevenson

Dr. Rebeka Stevenson is currently a part of the Rheumatology Physician team at Alberta Children’s
Hospital, including two specialty clinics for Psoriasis and Morphea/Scleroderma. Dr. Stevenson
completed her fellowship in 2014, with an emphasis on Paediatric Rheumatology. She has been a mentor,
lecturer, and preceptor to students, electives, and residents. Dr. Stevenson is currently the Residency
Program Coordinator for Paediatric Rheumatology within Alberta Children’s Hospital. She has also
been recognized for her contributions, throughout Alberta and Canada, with various awards and grants
to further her research and studies. She continues to contribute to research education and
studies of rheumatic diseases, their treatments, and coping management for paediatric patients.

Working Group(s):

  • Mentorship and Training Working Group

Elizabeth Stringer

Dr. Elizabeth Stringer is a Pediatric Rheumatologist and Associate Professor of Pediatrics at the IWK Health Centre in Halifax, Nova Scotia.  Dr. Stringer completed her clinical fellowship and research training in Toronto at the Hospital for Sick Children.

Dr. Stringer is involved in local and international research initiatives studying outcomes in pediatric rheumatic disease. She has served on the executive board of the Canadian Alliance of Pediatric Rheumatology Investigators (CAPRI) for 8 of the past 9 years and is currently the Chair of the Knowledge Translation (KT) Committee.

Dr. Stringer’s primary research interest is studying the uptake of information from research into clinical care.

Working Group(s):

  • Co-chair: Knowledge Transfer and Exchange Working Group – Intra Team

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Rebecca ten Cate

Dr. Rebecca ten Cate is an experienced pediatric rheumatologist and educator at the Leiden University Medical Centre in the Netherlands.

Her PhD thesis was on clinical aspects of oligoarticular JIA. Her main research interests are genetics and treatment strategies in JIA. Presently she is conducting a study in children with JIA to develop alternative ways of administration of biologics. She has published over a hundred peer-reviewed papers and several chapters in international handbooks on rheumatologic diseases in childhood.

Committee(s):

  • Co-chair: End User Advisory Committee
  • Executive Committee
  • Data Access Advisory Committee

Working Group(s):

  • Discovery Phase Working Group

Karine Toupin April

BSc OT, MSc, PhD

Dr. Karine Toupin-April is an Associate Scientist at the Children’s Hospital of Eastern Ontario (CHEO) Research Institute, and an Assistant Professor in the Department of Pediatrics and the School of Rehabilitation Sciences at the University of Ottawa. She is also one of the editors in the Cochrane Musculoskeletal Group.

Dr. Toupin-April holds a Bachelor of Science in Occupational Therapy, a Master’s degree in Rehabilitation, and a PhD in Public Health and Epidemiology from the University of Montreal. She also completed a post-doctoral fellowship in Epidemiology and Community Medicine at the University of Ottawa.

She has research expertise in chronic disease management, complementary and alternative medicine, patient-reported outcome measures, shared decision making and knowledge translation. Her research includes the development and assessment of patient-reported outcome measures, decision support interventions and self-management tools in pediatric and adult rheumatology. As a young investigator, her research program aims to develop and evaluate a decision support intervention to help youth with juvenile arthritis to choose among pain management options. Her research is funded by The Arthritis Society, the Canadian Institutes of Health Research and the Ontario Ministry of Research, Innovation and Science.

Committee(s):

  • Patient Preference Advisory Committee

Working Group(s):

  • Health Economics

Shirley Tse

Shirley Tse received her medical degree from the University of Toronto and completed her pediatric medicine and pediatric rheumatology at the University of Toronto and SickKids. This was followed by a CIHR Fellowship with further PhD training in Immunology and Cell Biology, also at the University of Toronto, where she studied the human host response to pathogens.

Dr. Tse joined the Rheumatology Division at SickKids in 2003 and is currently appointed as Associate Professor. She has been the Program Director for the Pediatric Rheumatology Training Program since July 2007.

Dr. Tse’s clinical and research interests are focused towards juvenile spondyloarthritis (diagnosis, classification, outcomes, radiologic imaging, and treatment) and in education (development of innovative methods of teaching pediatric rheumatology).

Working Group(s):

  • Knowledge Transfer and Exchange Working Group – Intra Team
  • Validation phase – Protocol development

Lori Tucker

Lori Tucker’s current position is as Clinical Professor in Pediatrics, University of British Columbia, and Division of Rheumatology, BC Children’s Hospital, as well as Clinical Investigator at the Child and Family Research Institute.  She is also the Director of the Pediatric Resident Research Program for the Department of Pediatrics, University of British Columbia. She is the past Chair of the Canadian Alliance for Pediatric Rheumatology Investigators, the national network for pediatric rheumatology research. She was a co-PI for ReACCh-Out, the first large longitudinal JIA inception cohort in North America, and is now co-Principal Investigator of LEAP (Linking Exercise, Physical Activity, and Pathophysiology in Canadian Children with Juvenile Idiopathic Arthritis), a multicentre study aimed at studying the interactions of physical activity, disease activity, inflammation, and bone development in children with JIA across Canada.  Through her leadership roles in the two largest multicenter longitudinal research studies on JIA in Canada over the past 10 years, she has developed expertise in multicenter study organization, database and data element design,  and data analysis. Dr. Tucker has also been a leader in transition care for youth with rheumatic diseases, as one of the clinical leads for one of the earliest clinical programs for Young Adults with Rheumatic Diseases in Canada, and as a co-investigator in the development of self-management programs for youth and children with JIA, a new patient questionnaire for transitioning youth with rheumatic diseases and as a participant in developing Transition Pathways for youth with chronic illness in BC.  Dr. Tucker has worked tirelessly in patient advocacy and parent/patient partnerships as the Medical Advisor and Board member for Cassie and Friends: A Society for Children with Arthritis and Rheumatic Diseases; this BC family-driven not-for-profit group now is one of the largest funders of research in pediatric rheumatic diseases in Canada,  and runs the largest provincial Family Day bringing together children, siblings, parents and health care providers in a day of learning and connection- a successful and unique knowledge translation environment.

Committee(s):

  • Patient Preference Advisory Committee

Working Group(s):

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

U

V

Merlijn van den Berg

Merlijn van den Berg is a pediatric rheumatologist/immunologist at the Emma Children’s Hospital/ Academic Medical Center (AMC) in Amsterdam.

He obtained his MD in 1995, a PhD in basic immunology in 2001, was trained as a pediatrician (1999-2004) and as a fellow in rheumatology and immunodeficiency (2004-2008), all at the AMC. In 2008 he became a staff member.

As senior member of his team of three physicians and 1 nurse, his main interests apart from providing excellent patient care for all pediatric rheumatology patients are imaging, biomarkers and treatment of JIA.

Committee(s):

  • Data Access Advisory Committee

Working Group(s):

  • Validation Phase Working Group – BioBank Data
  • Validation Phase Working Group – Protocol Development

Janiaap van der Net

Janjaap van der Net graduated as Physiotherapist in 1979, registered as Pediatric Clinical Specialist in 1987 and achieved a PhD in Clinical Health Sciences in 1995. In 2014 he became associate professor in Clinical Health Sciences at UMCU in the Netherlands.

His focus in research has evolved from functional outcome measures in childhood rheumatic diseases to exercise interventions and functional outcome in childhood musculoskeletal conditions into improving physical literacy and child health in childhood chronic conditions. He is head of the Child Development and Exercise centre (2010) and director of Child Development Services at the University Children’s Hospital at Utrecht University (2014).

Committee(s):

  • Patient Preference Advisory Committee

Philomine van Pelt

Dr. Philomine van Pelt has been a rheumatologist since 2002. She specialized in pediatric rheumatology at Wilhelmina Children’s Hospital UMC Utrecht (2002-2009) and is currently working as a pediatric and adult rheumatologist at the Erasmus University Medical Center Rotterdam. In 2011 she started the adolescent clinic for young persons in the ages of 12-24 years with rheumatic diseases. She is also trained in musculoskeletal ultrasound.

Her research work is focused on developmental aspects in children, adolescents and young adults with Juvenile Idiopathic Arthritis and transition of care.

Working Group(s):

  • Knowledge Transfer and Exchange Working Group – Intra Team
  • Health Economics Working Group

Annet van Royen-Kerkhof

Dr. Annet van Royen-Kerkhof is a pediatric immunologist/rheumatologist, and Head of the Department of Pediatric Immunology, Rheumatology, Infectiology, Hematology and Stem Cell Transplantation of the Wilhelmina Children’s Hospital, University Medical Centre Utrecht (UMCU) in the Netherlands.

Her clinical work, focusing on pediatric systemic autoimmune disease, mainly juvenile dermatomyositis (JDM), is closely interrelated with fundamental research from the Laboratory of Translational Immunology of the UMCU, and the Child Development & amp Exercise Center of the UMCU.

Her fields of interest are development of biomarkers (e.g. galactine-9) to assess disease activity in JDM, and development of training programs to increase physical activity in children with musculoskeletal inflammation. Dr. van Royen and co-workers actively contribute to research projects of centers for JDM worldwide.

In addition, Dr. van Royen is Program Director of the Medical Research Master SUMMA, a program to train clinician-scientists.

Committee(s):

  • Executive Committee

Working Group(s):

  • Co-chair: Knowledge Transfer and Exchange Working Group – Health Policy Impact Team
  • Health Economics Working Group
  • Mentorship and Training Working Group

W

Richard Wintle

Richard Wintle is Assistant Director of The Centre for Applied Genomics at Toronto’s SickKids hospital. His research focuses on structural variation of the human genome, and the genetics and genomics of neurodevelopmental disorders, particularly focused on cerebral palsy. Previously, he worked in a scientific operations role in the biotechnology sector, and acts as a consultant to various government, biotech/pharma, and market research firms. He has a PhD in Molecular and Medical Genetics from the University of Toronto, studying the organization of immunoglobulin genes, and postdoctoral training studying the neurobiology of the nematode C. elegans.

Working Group(s):

  • Discovery Phase Working Group

X

Y

Photo of Janet Yale

Janet Yale

Janet Yale is the president and CEO of The Arthritis Society (Canada). Janet previously served as executive vice president at TELUS, and president and CEO of the Canadian Cable Television Association, along with other c-suite roles in private, public and not –for-profit organizations. Currently Janet chairs the Arthritis Alliance of Canada and the Ontario Trillium Foundation, and sits on the boards of Samara and the Ottawa Art Gallery. Janet is a recipient of the Queen Elizabeth II Diamond Jubilee Medal.

Committee(s):

  • End User Advisory Committee

Z

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