CAPRI National Juvenile Idiopathic Arthritis Registry
This study, called the CAPRI National Juvenile Idiopathic Arthritis Registry, is collecting important information about children in Canada who have Juvenile Idiopathic Arthritis (JIA). JIA is a condition where a child's joints become inflamed, which can cause pain and stiffness. The researchers want to learn more about how JIA affects children over time, how different treatments work, and if there are any side effects. By gathering this ongoing data, doctors can make better decisions about care and discover new ways to treat JIA, helping to improve the lives of children and their families who are affected by this condition. It's a key step in understanding JIA better.
Överblick
Vad handlar denna studie om?
Juvenile Idiopathic Arthritis, or JIA, is a common type of arthritis that affects children under 16. It's when a child's immune system mistakenly attacks their own joints, causing pain, swelling, and stiffness. We don't fully understand why JIA happens, but it affects about 1 in every 1,000 children in Canada. If not treated properly, it can lead to lasting problems with movement and a child's overall well-being. This can affect the child, their family, and their daily life.
This study is being run by a group of expert children's rheumatologists across Canada, called CAPRI. They've been working together for 20 years, making big discoveries about JIA. The CAPRI JIA Registry is like an ongoing health record for Canadian children with JIA. They collect information over time about how the disease changes, how well treatments work, and any problems that might come up. This helps doctors learn more about JIA and find the best ways to care for children with the condition.
Even though there have been many studies, there are still a lot of questions. For example, families often want to know what the future holds for their child, which treatments are best, and what side effects to expect. This registry helps us answer these questions by collecting real-world information from many children. By understanding these patterns, doctors can make more informed decisions about treating JIA and helping children lead healthier, more active lives.
Viktiga punkter
- It's a long-term study collecting information about children with JIA.
- No new treatments or medications will be given; your child follows their usual care.
- Helps doctors understand JIA better and improve future treatments for all children.
- Your child must meet specific criteria regarding their JIA diagnosis or past study involvement.
- Participation involves sharing medical information and completing questionnaires.
- You can stop participating at any time without affecting your child's care.
Vem kan vara berättigad?
To join this study, a child must have been diagnosed with Juvenile Idiopathic Arthritis (JIA) within the last three months. We are also welcoming children who have previously taken part in two older studies called ReACCh-Out or LEAP, even if they were diagnosed longer ago, as long as they finished their two-year check-ups in the LEAP study.
Only children who have a confirmed diagnosis of JIA can take part. If a child was diagnosed with JIA more than three months ago and hasn't been part of the previous LEAP or ReACCh-Out studies, they won't be able to join. Also, if a family isn't able to answer questions in either English or French, they unfortunately won't be able to participate.
Kan denna studie passa dig?
Svara på dessa snabba frågor för att se om du kan vara berättigad. Detta är endast en vägledning — forskarteamet fattar det slutgiltiga beslutet.
- Is your child under 18 years old?
- Was your child diagnosed with JIA within the last 3 months?
- Did your child previously participate in the ReACCh-Out or LEAP studies?
- Can you answer questions in English or French?
- Does your child have a confirmed diagnosis of JIA?
Vad innebär deltagande?
This study is a registry, which means it will collect information about your child's JIA over time. There won't be any new treatments or medications given as part of this study; your child will continue to receive their usual care from their doctor. You will be asked to complete questionnaires, likely about your child's health, how they are feeling, and their daily life. Researchers will also collect information from your child's medical records about their diagnosis, treatments, and any changes in their condition. The exact number of visits or the total time you'll be involved isn't specified, but as a registry, it's designed to follow children for an extended period to understand long-term effects.
Potentiella risker och fördelar
Platser (15)
- University of Calgary / Alberta Children's HospitalVerifierat postnummerCalgary, Kanada· Rekrytering
- University of AlbertaVerifierat postnummerEdmonton, Kanada· Rekrytering
- BC BarnsjukhusVerifierat postnummerVancouver, Kanada· Rekrytering
- University of Manitoba/Children's hospital research instituteVerifierat postnummerWinnipeg, Kanada· Rekrytering
- Memorial University/Janeway Childrens Health and Rehabilitation CentreVerifierat postnummerSt. John's, Canada· Rekrytering
- IIWK Health CentreVerifierat postnummerHalifax, Kanada· Rekrytering
- McMaster University/McMaster Children's HospitalVerifierat postnummerHamilton, Kanada· Rekrytering
- London Health Sciences CentreVerifierat postnummerLondon, Kanada· Rekrytering
- Children's Hospital of Eastern OntarioVerifierat postnummerOttawa, Kanada· Rekrytering
- Hospital for Sick ChildrenVerifierat postnummerToronto, Kanada· Rekrytering
- McGill University Health CentreVerifierat postnummerMontreal, Kanada· Rekrytering
- Université de MontréalVerifierat postnummerMontreal, Kanada· Rekrytering
Vanliga frågor
What is JIA?
JIA stands for Juvenile Idiopathic Arthritis. It's a type of arthritis in children where their joints become inflamed, causing pain and stiffness.
Will my child get a new medicine in this study?
No, this study is a registry, meaning it collects health information. Your child will continue with their usual JIA treatment as prescribed by their doctor.
Vem leder denna studie?
This study is being run by the Canadian Alliance of Pediatric Rheumatology Investigators (CAPRI), a group of expert children's arthritis doctors across Canada.
Hur länge kommer mitt barn att vara med i studien?
Because it's a registry, the study aims to collect information over a long period to understand how JIA changes over time. The exact duration isn't specified.
Will taking part affect my child's medical care?
No, your child's medical care will not be affected by their participation. You can also withdraw from the study at any time.
Hur du får reda på mer
Jaime Guzman, MD, FRCPC
Prata alltid med din läkare eller specialist innan du bestämmer dig för att delta i en studie.
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Drivs av vårt forum på community.patient.info. Var vänlig och respektfull — detta är inte medicinsk rådgivning.