Juvenile Idiopathic Arthritis (JIA) Studies     

RACER Transition Questionnaire                           
Youth with JIA and their parents often have a number of concerns about moving on to adult care. Poor transition to adult care may cause negative consequences on the young adult's health. Transition support and education is a key component as children begin to mature. The Readiness for Adult Care in Rheumatology (RACER) transition questionnaire was developed by Dr. Jennifer Stinson at the Hospital for Sick Kids and other Rheumatologists, and it aims to check how prepared youth are to move on to adult care. By identifying areas of improvement through the questionnaire, the adolescents can get the appropriate resources to make the transition to adult care succesful. 

PREVENT-JIA
The PREVENT study is being headed by Dr. Dirk Foell at the University of Münster, Germany, and our pediatric rheumatology team at BCCH will be collaborators in the project. In this study, investigators will be looking at a new biomarker in the blood of children with JIA which has promise for predicting disease flares. In particular, we will be trying to determine whether this biomarker will help predict the risk of disease flare after a child with JIA is taken off medications because their disease is felt to be in clinical remission. Click here for more information on PREVENT.

Jointly Managing JIA Online
This study is being led by Dr. Jennifer Stinson at the Hospital for Sick Kids in Toronto, Ontario. Her team developed a web program that teaches children and families how to cope with and manage arthritis. This study will test the web program to see if it is easy to use and if the children feel less pain and have a better quality of life compared to children who do not play the game. Click here for more information on the Jointly study.

Translating Research into Practice: Identifying Factors that Influence the Uptake of Canadian Research Findings into the Clinical Care of Children with Arthritis
In this study, we held focus groups with children with JIA and their parents to understand how they find new information on the disease. This may include the barriers they face when they seek this information, the information they feel is most important and useful to them, and their awareness and attitudes towards research. The focus groups will be conducted in other centres across Canada such as Halifax, Ottawa, Hamilton, and Vancouver. Dr. Lori Tucker is the principal investigator at BC Children's Hospital.

LEAP: Linking Exercise, Activity, and Pathophysiology in Childhood Arthritis: A Canadian Collaborative Team

This study is looking at the relationships between physical activity, bone and muscle development and disease activity in Juvenile Idiopathic Arthritis. LEAP is a Canada wide study with Dr. Lori Tucker as the principal investigator at BC Children's Hospital. It is also the first study to look at how active children are at different levels of disease activity. For more information, check out the LEAP website or our Facebook page!  

LEAP Exercise Intervention 
The LEAP Exercise Intervention is a pilot study headed by Dr. Lori Tucker and Dr. Kristin Houghton at BC Children's Hospital. The purpose of this exercise intervention is to determine if a home-based exercise program improves bone density and muscle mass in children and teens with juvenile idiopathic arthritis. This study is linked to the main LEAP study and will continue efforts to learn more about how to promote increased activity and well being in children and teens with JIA. 

The Treg Study: The Role of T Regulatory Cells in Control and Remission of Juvenile Idiopathic Arthritis (JIA)
Studies show that the swollen, inflamed joints seen in JIA patients may be due to the dysfunction of a certain type of white blood cell called the T regulatory cell (Treg).  Tregs produce chemokines (protein signals) which attract immune cells towards them, leading to suppression of the immune response.  By analyzing blood and synovial fluid, the study will examine whether this mechanism is dysfunctional in the Tregs of JIA patients and if monitoring of the mechanism could be developed into a new tool that would help predict disease remission versus disease flare.  This study is led by Dr. Kimberly Morishita and Dr. Anne Pesenacker.

Cardiopulmonary Comorbidities in Systemic Juvenile Idiopathic Arthritis (CP in sJIA) 
Headed by Dr. Kimberly Morishita, CP in sJIA is a study that examines heart and lung symptoms in children with systemic juvenile idiopathic arthritis. Children with sJIA are often affected by symptoms involving other organ systems in addition to their joints. The study hopes to determine the frequency of heart/lung symptoms in children with sJIA, and determine whether these symptoms are a result of disease or a side effect of medication. Results from this study may lead to regular screening for heart and lung abnormalities in children with sJIA.

TTC: Teens Taking Charge: An Internet-based Self-management Program for Adolescents with Arthritis: A randomized Controlled Trial
Teens Taking Charge is a randomized controlled trial to study a new online self-management and educational program for teens with JIA. As JIA affects teens’ quality of life, such as their physical health, or relationship with their friends and family, the purpose of Teens Taking Charge is to determine if this online support program make a difference to teens diagnosed with JIA. The Pediatric Rheumatology team at BCCH is collaborating in this study with other pediatric rheumatology centers across Canada. Click here for more information on Teens Taking Charge.

BBOP: Biologically-Based Outcome Predictors in Juvenile Idiopathic Arthritis

What matters the most for parents, patients and clinicians in predicting the course of Juvenile Idiopathic Arthritis?

Focus groups at multiple sites across Canada were conducted to try and determine the most important information about Juvenile Idiopathic Arthritis for patients and their families when they were first diagnosed. Focus groups of patients, parents, Rheumatologist and allied health care professional were done at several sites across Canada. The information gained will help guide development of prediction tools for outcomes in JIA, as well as possibly guide national research agendas.

Systemic Lupus Erythematosus (SLE) Studies

Towards Measures of Lupus Nephritis Activity & Damage for Children
The purpose this study is try and identify better ways to measure and monitor kidney disease activity and damage in children and teens with SLE across Canada and the United States. In this study, researchers are looking at whether new biomarkers in the urine that seem to be predictive of kidney disease in SLE correlate with specific types of abnormalities seen on kidney biopsies, a common test done when patients with lupus develop kidney problems. 

SLED: Systemic Lupus Erythematosus and Diabetes Study
The SLED study includes patients with SLE and Type I Diabetes (recruited by the Division of Endocrinology). The purpose of the SLED study is to better understand what causes SLE and to identify biomarkers that could help monitor and treat SLE. Blood samples are collected from all new patients with SLE, at time of diagnosis and over various time points, to be used by collaborating immunology researchers at BCCH who work with the Pediatric Rheumatology team.

Vasculitis Studies

ARChiVe: A Registry for Children with Vasculitis: e-entry

BrainWorks is an international study of children and teens with CNS (central nervous system) vasculitis, an inflammatory brain disease. Dr. David Cabral is the principal investigator for BC Children’s Hospital. The goal of the BrainWorks study is to create a new classification system for CNS vasculitis by characterizing patient’s symptoms at the time the disease first presents. For more information visit the BrainWorks website! 

Clinical Drug Trials

Canakinumab for Children Systemic Juvenile Arthritis
The Canakinumab drug study is for patients diagnosed with Systemic Juvenile Idiopathic Arthritis (sJIA). The purpose of this drug study is to see if Canakinumab is safe and effective in the treatment of sJIA. 

Canakinumab for Children with Hereditary Periodic Fevers
The purpose of this clinical trial is to determine how safe and effective Canakinumab is in treating children with hereditary periodic fevers compared to placebo. Placebo is a drug that looks like Canakinumab but has no active ingredients. 

Other Studies

STOPP: Steroid-Induced Osteoporosis in the Pediatric Population – Canadian Incidence Study

The STOPP study is a Canada wide study looking at the effects of steroids on bone health in children and teens. Participants in this study have rheumatic conditions and being treated with oral or intravenous (IV) steroids as part of their regular treatment.

YHES! - The Young Adult Health and Employment Study
YHES! is a Canada wide study for young adults with Systemic Lupus Erythematosus (SLE) and Juvenile Idiopathic Arthritis. The goal of the YHES! study is to discover the experiences young adults with these chronic conditions have finding and maintaining employment. Youth in the Young Adults with Rheumatic Diseases (YARD) Clinic here in Vancouver were asked to participate in this online survey study. For more information please go to the YHES! website: www.yhes.ca.

Patient Satisfaction Survey
The Rheumatology team conducted a survey of all parents and patients to find out more about their experiences in the Pediatric Rheumatology Clinic.  The survey project was led by Jenny Tekano, RN and Dr. Lori Tucker.  We believe the results will help guide changes and improvements to care in our clinics that align with the needs of children and their parents.