Complete Cognitive Intervention for cSLE
This research project is focused on creating a new online program designed to support the brain health of children and teenagers, aged 13-18, who have a type of lupus called childhood-onset lupus. The study aims to develop a program that helps with thinking skills and overall mental wellbeing. Researchers want to work closely with young people with lupus to design this program, making sure it's practical, easy to use, and genuinely helpful. They will then test how well it works and if participants find it acceptable. This is an important step towards providing better support for young people living with lupus.
At a glance
What is this study about?
This research project is all about helping young people who have a condition called lupus, specifically childhood-onset lupus (cSLE). Lupus is a long-term condition that can affect different parts of the body, and sometimes it can impact how a person thinks or feels. This study wants to create a special online program to support the brain health of young people aged 13 to 18 who are living with lupus. The main goal is to make sure this program helps with things like memory, problem-solving, and general well-being.
The exciting part is that the researchers won't just design this program by themselves. They plan to work directly with young people who have lupus. This means that your experiences and ideas will be really important in shaping what the program looks like and how it works. By getting patients involved from the start, they hope to create something that is truly useful and easy for young people to use.
After designing the program, the researchers will try it out with a small group of young people. This is to see how practical it is to use, if people like it, and if it seems to make a positive difference. It's an important first step to developing better ways to support the brain health of young people with lupus in the future. They are not testing any new medicines, but rather a support program.
Key takeaways
- New online program for brain health in young people with lupus.
- Ages 13-18 with childhood-onset lupus (cSLE) are eligible.
- Patients help design the program to ensure it's useful.
- Participation involves online sessions and feedback.
- No new medicines, just a support program.
- Your input helps improve future care for others with lupus.
Who may be eligible?
To be part of this study, you need to be aged between 13 and 18 years old. You must also have received a diagnosis of childhood-onset lupus (cSLE) from your doctor, and this diagnosis needs to meet specific medical guidelines.
There are also a few reasons why you might not be able to join. For example, if you have other conditions that significantly affect your thinking, like a severe learning disability or active mental health problems such as psychosis, then you wouldn't be able to take part. Similarly, if you have serious hearing or vision problems that would make it difficult to participate in online group activities, you wouldn't be eligible.
Finally, because this is an online program, you need to be able to speak English and have access to technology like a phone, tablet, or computer, along with an internet connection, to join in the virtual sessions.
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.
- Are you between 13 and 18 years old?
- Do you have a diagnosis of childhood-onset lupus (cSLE)?
- Can you speak English?
- Do you have access to a computer, tablet, or phone with internet?
- Do you feel your thinking is not severely impacted by another condition?
- Do you have good enough hearing and vision to take part in online groups?
What does participation involve?
The study involves taking part in an online program that supports brain health. You will be helping to develop and test this program. This means you’ll likely participate in online group sessions, give feedback on what you think about the program, and complete some assessments to see how it’s working. These assessments might involve answering questionnaires or doing short tasks to check your thinking skills. Since it's an online intervention, you'll need regular access to a device (like a tablet or computer) and the internet. The total duration of your participation, including how many sessions or assessments, will be clearly explained by the study team, but it will involve engaging with the online program for a period.
Potential risks and benefits
Locations (1)
- The Hospital for Sick ChildrenVerified postcodeToronto, Canada· Recruiting
Common questions
What is childhood-onset lupus?
It's a type of lupus that starts in childhood or teenage years, causing the body's immune system to mistakenly attack its own healthy tissues.
Will I have to take new medicine?
No, this study is about an online support program, not about testing new medications.
How much time will this take?
The study team will give you a clear schedule, but it will involve participating in online sessions and providing feedback over a certain period.
Do I need special equipment?
You'll need a device like a computer, tablet, or smartphone, and a reliable internet connection to join the online program.
Can I leave the study if I change my mind?
Yes, you can withdraw from the study at any point without it affecting your usual medical care.
How to find out more
Busi Zapparoli, PhD
Always speak to your GP or specialist before deciding to take part in a study.
Interested in taking part?
Discussion
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