CAPRI National Juvenile Idiopathic Arthritis Registry
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The safety and scientific validity of this study is the responsibility of the study sponsor and investigators. Listing a study does not mean it has been evaluated by the U.S. Federal Government. Know the risks and potential benefits of clinical studies and talk to your health care provider before participating. Read our disclaimer for details. |
ClinicalTrials.gov Identifier: NCT03245801 |
Recruitment Status :
Recruiting
First Posted : August 10, 2017
Last Update Posted : November 20, 2019
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Condition or disease |
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Juvenile Idiopathic Arthritis (JIA) |

Study Type : | Observational [Patient Registry] |
Estimated Enrollment : | 300 participants |
Observational Model: | Cohort |
Time Perspective: | Prospective |
Target Follow-Up Duration: | 10 Years |
Official Title: | The Canadian Alliance of Pediatric Rheumatology Investigators National Juvenile Idiopathic Arthritis Registry |
Actual Study Start Date : | February 1, 2017 |
Estimated Primary Completion Date : | February 1, 2026 |
Estimated Study Completion Date : | February 1, 2026 |

- Proportion of Children with Clinical inactive disease [ Time Frame: At one year ]This is an accepted validated composite measure requiring all of the following: No active joints, no extra-articular manifestations, a physician global assessment of disease activity of less than 1, morning stiffness of 15 min or less, and normal inflammatory markers (ESR or CRP).
- Juvenile Arthritis Disease Activity Score [ Time Frame: One year ]This is an accepted validated measure composed of the sum of physician global assessment, parent global assessment and up to 10 active joints.
- Pain intensity [ Time Frame: One year ]Severity of arthritis pain in the last week, from 0 to 10
- Juvenile Arthritis Quality of Life Questionnaire [ Time Frame: One year ]Composite measure of quality of life with total of 72 items, score from 1 (best) to 7 (worst) quality of life.
- Childhood Health Assessment Questionnaire Disability Index [ Time Frame: One year ]Composite measure of functional disability, score from 0 (no disability) to 3 (severe disability)

Choosing to participate in a study is an important personal decision. Talk with your doctor and family members or friends about deciding to join a study. To learn more about this study, you or your doctor may contact the study research staff using the contacts provided below. For general information, Learn About Clinical Studies.
Ages Eligible for Study: | up to 18 Years (Child, Adult) |
Sexes Eligible for Study: | All |
Accepts Healthy Volunteers: | No |
Sampling Method: | Non-Probability Sample |
Inclusion Criteria:
- All patients newly diagnosed with JIA within the last 3 months
- All patients who participated in the original ReACCh-Out study
- LEAP study patients from 'newly diagnosed' and 'ReACCh-Out' cohorts who have completed their two year follow up in LEAP
Exclusion Criteria:
- Patients with an unconfirmed JIA diagnosis
- Patients diagnosed with JIA more than 3 months prior to the clinic visit, who were not followed in LEAP and /or ReACCh-Out studies.
- If the family as a whole is unable to answer questionnaires in English

To learn more about this study, you or your doctor may contact the study research staff using the contact information provided by the sponsor.
Please refer to this study by its ClinicalTrials.gov identifier (NCT number): NCT03245801
Contact: Jaime Guzman, MD, FRCPC | 604-875-2437 | jguzman@cw.bc.ca | |
Contact: Felice Mizan | 6048752000 ext 4839 | felice.mizan@cw.bc.ca |
Canada, Alberta | |
University of Calgary / Alberta Children's Hospital | Recruiting |
Calgary, Alberta, Canada | |
Contact: Heinrike Schmeling, MD | |
University of Alberta | Recruiting |
Edmonton, Alberta, Canada | |
Contact: Dax Rumsey, MD, FRCP(C) | |
Canada, British Columbia | |
BC Children's Hospital | Recruiting |
Vancouver, British Columbia, Canada, V6H 3N1 | |
Principal Investigator: Jaime Guzman, MD, FRCPC | |
Canada, Manitoba | |
University of Manitoba/Children's hospital research institute | Not yet recruiting |
Winnipeg, Manitoba, Canada | |
Contact: Kerstin Gerhold, MD, MSc | |
Canada, Newfoundland And Labrador, Canada | |
Memorial University/Janeway Childrens Health and Rehabilitation Centre | Not yet recruiting |
St. John's, Newfoundland And Labrador, Canada, Canada | |
Contact: Paul Dancey, MD,FRCPC | |
Canada, Nova Scotia | |
IIWK Health Centre | Not yet recruiting |
Halifax, Nova Scotia, Canada | |
Contact: Adam Huber, MD | |
Canada, Ontario | |
McMaster University/McMaster Children's Hospital | Recruiting |
Hamilton, Ontario, Canada | |
Contact: Michelle Batthish, MSc,MD,FRCPC | |
London Health Sciences Centre | Recruiting |
London, Ontario, Canada | |
Contact: Roberta Berard, MD | |
Children's Hospital of Eastern Ontario | Recruiting |
Ottawa, Ontario, Canada | |
Principal Investigator: Ciaran Duffy, MD | |
Hospital for Sick Children | Not yet recruiting |
Toronto, Ontario, Canada | |
Contact: Linda Hiraki, MD,FRCPC,MS | |
Canada, Quebec | |
McGill University Health Centre | Recruiting |
Montréal, Quebec, Canada | |
Contact: Gaëlle Chédeville, MD | |
Université de Montréal | Not yet recruiting |
Montréal, Quebec, Canada | |
Contact: Julie Barsalou, MD | |
University of Sherbrooke | Recruiting |
Sherbrooke, Quebec, Canada | |
Contact: Alessandra Bruns, MD | |
Canada, Saskatchewan | |
Royal University Hospital | Not yet recruiting |
Saskatoon, Saskatchewan, Canada | |
Contact: Alan Rosenberg, BA,MD,FRCPC |
Study Chair: | Jaime Guzman, MD, FRCPC | University of British Columbia | |
Principal Investigator: | Adam Huber, MD | IIWK Health Centre, Halifax, Nova Scotia, Canada | |
Principal Investigator: | Ciaran Duffy, MD | Children's Hospital of Eastern Ontario, Ottawa, Ontario | |
Principal Investigator: | Gaëlle Chédeville, MD | McGill University Health Centre/Research Institute of the McGill University Health Centre | |
Principal Investigator: | Heinrike Schmeling, MD | Alberta Children's Hospital | |
Principal Investigator: | Linda Hiraki, MD,FRCPC,MS | Hospital for Sick Children (SickKids) | |
Principal Investigator: | Heinrike Schmeling, MD | University of Calgary / Alberta Children's Hospital | |
Principal Investigator: | Susanne Benseler, MD, PhD | University of Calgary / Alberta Children's Hospital | |
Principal Investigator: | Marinka Twilt, MD MSCE PhD | University of Calgary / Alberta Children's Hospital |
Publications:
Responsible Party: | Jaime Guzman, Clinical Associate Professor, University of British Columbia |
ClinicalTrials.gov Identifier: | NCT03245801 |
Other Study ID Numbers: |
H16-00309 UBC Number: F15-01938 ( Other Grant/Funding Number: Arthritis Society ) |
First Posted: | August 10, 2017 Key Record Dates |
Last Update Posted: | November 20, 2019 |
Last Verified: | November 2019 |
Individual Participant Data (IPD) Sharing Statement: | |
Plan to Share IPD: | Yes |
Plan Description: | CAPRI researchers who seek to use de-identified registry data to answer research questions not contemplated in this protocol will apply through the CAPRI Scientific Protocol Evaluation Committee (SPEC) process and produce proof of ethics board approval before release of data. Registry site directors will have access to their local data for smaller local research projects. Provision of information regarding project title, aim, and any ensuing publication will be required so that a complete record of research projects can be maintained. Non-CAPRI researchers who seek access to registry data must have a research team that includes at least one CAPRI member and apply for use through the CAPRI SPEC. Proof of ethics board approval will be required before release of data. All research abstracts, presentations and publications using registry data must acknowledge registry sponsors.The registry committee and CAPRI executive will determine data access recovery fees. |
Supporting Materials: |
Study Protocol Analytic Code |
Time Frame: | Ongoing, as long as the Registry is in operation. |
Access Criteria: | Non-CAPRI researchers who seek access to registry data must have a research team that includes at least one CAPRI member and apply for use through the CAPRI SPEC. Proof of ethics board approval will be required before release of data. |
Studies a U.S. FDA-regulated Drug Product: | No |
Studies a U.S. FDA-regulated Device Product: | No |
Juvenile idiopathic arthritis Canada Registry |
Clinical outcomes Adverse events CAPRI |
Arthritis Arthritis, Juvenile Joint Diseases Musculoskeletal Diseases |
Rheumatic Diseases Connective Tissue Diseases Autoimmune Diseases Immune System Diseases |