Observational Study of Pediatric Rheumatic Diseases: The CARRA Registry
The CARRA Registry is an ongoing study collecting important health information from children and young people across the UK who have rheumatic diseases. These are conditions that affect joints, muscles, and bones. By gathering this information, researchers can learn more about how these diseases develop and how different treatments work over time. The main goal is to improve understanding of these conditions, find safer and more effective ways to treat them, and answer important questions about the medicines used. This registry helps doctors understand if treatments are truly safe and effective, especially for long-term use. It's not testing new drugs, but rather observing current care to build a better future for young people living with rheumatic conditions.
At a glance
What is this study about?
Imagine a big, organised collection of health information for children and young people in the UK with conditions like juvenile arthritis or lupus. That's essentially what the CARRA Registry is all about!
For a long time, it's been tricky to answer really important questions about how safely and effectively medicines work for these conditions in young people. This is because there often aren't enough patients in smaller studies to spot rare side effects, or studies might not last long enough to see what happens years down the line. The CARRA Registry was set up to fix this. It brings together information from many children and young people across different hospitals and clinics, making it much easier to learn from a larger group.
By gathering and looking closely at this information, doctors and researchers hope to understand more about rheumatic diseases in young people. This includes learning which treatments work best for different individuals, how long treatments should be given, and if there are any side effects or problems that only show up over time. Ultimately, the aim is to improve the care and treatment available for all children and young people living with these conditions.
Key takeaways
- This study helps improve care for young people with rheumatic diseases.
- It collects information from routine medical appointments, not extra visits.
- You won't be given new medicines or treatments as part of the study.
- Data collected will help doctors understand how treatments work over time.
- Participation is completely voluntary and you can withdraw at any point.
Who may be eligible?
To be part of this study, you need to have been diagnosed with a rheumatic disease when you were under 16 years old. If your rheumatic disease is something other than juvenile arthritis (JIA), then you needed to have been diagnosed before you turned 19.
Another important requirement is that you, or your parent/guardian if you're under 18, must be willing to give written permission and agree to follow the study's procedures. You also need to be happy for the study team to get in touch with you in the future.
However, if you are older than 21 years of age when the study team is considering you for enrolment, you won't be able to join. All sexes are welcome to participate.
Could this study suit you?
Answer these quick questions to see if you may be eligible. This is a guide only — the research team makes the final call.
- Were you diagnosed with your rheumatic disease before your 16th birthday (or 19th if not JIA)?
- Are you currently 21 years old or younger?
- Are you (or your parent/guardian) willing to give written permission to take part?
- Are you happy for the study team to contact you in the future if needed?
What does participation involve?
This is an 'observational' study. This means you wouldn't be asked to change any of your current treatments or have any extra tests just for the study. Instead, the study team would simply collect information from your regular doctor's visits, check-ups, and medical records related to your rheumatic disease.
They would gather details about your diagnosis, which medicines you're taking, how well they're working for you, and if you experience any side effects. There are no special visits required, and the study doesn't involve taking new medication. The information would be collected over time as part of your ongoing care, helping to build a picture of how your condition progresses and responds to treatment.
Potential risks and benefits
Locations (82)
- University of Alabama at BirminghamVerified postcodeBirmingham, United States· Recruiting
- Phoenix Children's HospitalVerified postcodePhoenix, United States· Recruiting
- Children's Hospital of Los AngelesVerified postcodeLos Angeles, United States· Not yet recruiting
- Mattel Children's Hospital at University of California Los AngelesVerified postcodeLos Angeles, United States· Recruiting
- Stanford University Medical CenterVerified postcodePalo Alto, United States· Recruiting
- Rady Children's Hospital San DiegoVerified postcodeSan Diego, United States· Recruiting
- University of California at San Francisco Medical CenterVerified postcodeSan Francisco, United States· Recruiting
- The Children's Hospital of ColoradoVerified postcodeAurora, United States· Recruiting
- Connecticut Children's Medical CenterVerified postcodeHartford, United States· Recruiting
- Yale UniversityVerified postcodeNew Haven, United States· Terminated
- Childrens National Medical CenterVerified postcodeWashington D.C., United States· Recruiting
- University of Florida - Shand's Children's HospitalVerified postcodeGainesville, United States· Recruiting
Common questions
What is a 'rheumatic disease'?
Rheumatic diseases are conditions that cause pain, swelling, and stiffness in your joints, muscles, and bones. Examples include juvenile arthritis and lupus.
Will I have to take new medicines?
No, this study is 'observational', meaning you'll continue with your usual treatment as prescribed by your doctor. No new medicines are given as part of the study.
How long will I be in the study?
This is an ongoing registry, so information will be collected over time as part of your regular medical care. There isn't a set end date for your participation, but you can leave at any time.
Will my privacy be protected?
Yes, great care is taken to protect your personal information. Any data collected will be kept private and handled securely.
What is the main goal of this study?
The main goal is to learn more about rheumatic diseases in children and young people, to improve treatments, and make them safer in the future.
How to find out more
Mara L Becker, MD, MSCE
Always speak to your GP or specialist before deciding to take part in a study.
Interested in taking part?
Discussion
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