We are currently enrolling participants for rheumatology studies. Read about the studies here.
Juvenile Idiopathic Arthritis (JIA) Studies
Beginning in 2005, The Canadian Alliance of Pediatric Rheumatology Investigators have tracked Canadian youth diagnosed with JIA through various studies. The CAPRI-JIA will allow researchers to continue this work and allow them to conduct detailed research on how JIA is affecting the lives of children and adolescents with the condition. The information collected will allow the research team to better understand and treat JIA. This Canada-wide study is being led by Dr. Jaime Guzman
at BC Children's Hospital.
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.
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.
Children can develop swelling in their eyes called uveitis and it may cause them some visual impairment. Currently, there are no reliable methods for early detection and monitoring of uveitis. Parents cannot see that their child’s vision is being impaired and a young child themselves may not notice. Led by Dr. Kelly Brown, the research team will collect tears, eye crust, and blood samples from children who have a form of uveitis and/or JIA to compare to children who do not have uveitis and/or JIA.
Systemic Lupus Erythematosus (SLE) Studies
PedANAM: Studying the Pediatric ANAM in pSLE
Ped-Automated Neuropsychological Assessment Metrics (PedANAM) is a specialized computer program used to measure cognitive function, and has been adapted to be used in children and teens. As SLE can cause impairments in learning, thinking, and memory the PedANAM study is looking at teens with SLE to see if using this simple computer test in the routine clinic visit is feasible and can show changes in brain functioning over time. The PedANAM study is being conducted in approximately 17 hospitals in Canada and the United States. Dr. Lori Tucker heads the PedANAM study at BC Children’s Hospital.
PedVas: The Pediatric Vasculitis InitiativeCAN-Fever Registry
The PedVas study is an international study, headed by Dr. David Cabral, based at BC Children’s Hospital and includes collaborators in Canada, US, and various countries across the globe. The project is funded by the Canadian Institutes of Health Research (CIHR). This study is examining childhood chronic vasculitis, a set of inflammatory diseases affecting blood vessels in body organs such as the kidneys, lungs and brain. Through the PedVas study Dr. Cabral and his colleagues hope to learn more about pediatric vasculitis and improve the diagnosing and treatment of vasculitis in children and adolescents. You can read more about PedVas on the clinicaltrials.gov website.
Compared to other diseases in kids, autoinflammatory diseases are rare and haven't been studied as much. The purpose of this registry is to develop a collection of information about autoinflammatory diseases in kids in order to better understand and better treat these diseases. Researches will be able to use the registry as a tool to help determine what sort of research questions are important to study. Children diagnosed with any type of autoinflammatory disease may be eligible for this study.
60 Days of iThermonitoring
Periodic fevers are often difficult to identify as symptoms can look like a common infection. Therefore many children suffer for several years before physicians recognize their real problem. Even with a diagnosis, there are so far no satisfying treatment guidelines and as a result the affected children are at significant risk for lifelong poor health and disability. At the pediatric rheumatology clinic at BCCH, we are trying to fill in the knowledge gaps associated with periodic fevers in children. In this study we are searching for inflammatory proteins measured in non-invasive samples (saliva and urine) that can help physicians to faster set a correct diagnose and inform about the progression of the disease. We will also be asking families to test a wireless thermometer for monitoring their child's temperature. Children diagnosed with PFAPA and are having active episodes may be eligible for this study.
Clinical Drug Trials
Tofacitinib for Children with Juvenile Idiopathic Arthritis
This clinical trial is being conducted to study a new drug called Tofacitinib. We want to determine how safe and effective it is in children with Juvenile Iidiopathic Arthritis compared to placebo (a compound that looks like Tofacitinib but has no active medicine in it). Children who are diagnosed with Oligoarthritis (extended), Polyarthritis, Systemic JIA, Psioratic arthritis, or Enthesitis-related arthritis may be eligible to participate in this study. You can read more about the study on clinicaltrials.gov.
The Abatacept Registry study is being conducted at over 90 research centres all over the world to learn more about the long-term safety of the medication Abatacept (Orencia) and to see if it has good or bad effects on JIA. Patients who have been diagnosed with JIA and are taking Abatacept are eligible to participate in this study.
Upcoming Research Studies
Recruitment for these studies will start in the near future. Talk to any member of the research team to find out more information and see if you are eligible to join!
iCanCope with Pain
JIA can cause chronic musculoskeletal pain in children and youth with the condition. Dr. Jennifer Stinson (Hospital for Sick Kids in Toronto) and her team have developed an 'app' to teach youth with JIA how to effectively manage their pain. The goal of this research project is to evaluate the effectiveness of “iCanCope with Pain”, the first smartphone-based pain coping application for use in adolescents with JIA. The study will be conducted at three centres in Canada - Halifax, Toronto, and Vancouver. Dr. Lori Tucker is the lead investigator at BC Children's Hospital.
JIA has been found to be associated with difficulties in social and role functioning as well as physical and emotional symptoms which can affect a child's quality of life. Dr. Jennifer Stinson (Hospital for Sick Kids in Toronto) and her team have developed an online peer support program for adolescents with JIA. Youth will be paired with trained mentors who are young adults living with JIA, and they will have weekly Skype calls. This study is being done to determine the practicality and feasibility of this program for Rheumatology teams across Canada. Dr. Lori Tucker is the lead investigator at BC Children's Hospital.
Rheumatology Biobank Doctors and Scientists at BC Children’s Hospital and BC Women’s Hospital have created the BC Children’s Hospital BioBank. The BioBank would like to collect samples and clinical data from children and sometimes their families to create a bank (or library) of samples for use in research to better understand the causes of diseases of children and families, with the ultimate goal of improving treatment and preventing diseases.