WHY STOP-JIA IS NEEDED
About 300,000 children in the United States have juvenile idiopathic arthritis (JIA). JIA causes joint stiffness, swelling, and damage. It can also cause problems with bone development and growth. More than half of children with JIA have a form of the disease called polyarticular JIA (pJIA), which causes swelling in five or more joints. Having pJIA can make it hard to do daily activities such as getting dressed, brushing teeth, eating, and climbing stairs. Because of painful bone and joint problems, children with pJIA may be less involved than their peers in school and social activities.
There is no cure for pJIA, but treatments are available. The mostly commonly used medications are called nonbiologic disease-modifying medicines. These medications can slow down pJIA progression and can also help limit inflammation in the joints. Another class of medications are called biologic disease-modifying medicines. These medicines are based on substances found in living things and can also help limit inflammation in the joints. Doctors don’t know how biologic medicines compare with nonbiologic medicines, nor which type of medicine to give first if their patients are considering taking both. Patients usually start with a nonbiologic medicine. If it doesn’t work, then they move on to a biologic medicine. Doctors and researchers want to know whether starting a biologic medicine earlier or by itself would lessen bone or joint damage, or whether it would cause more side effects, or both.
WHO CAN THIS RESEARCH HELP?
Results from this research can help doctors, patients, and families decide which treatment to try first to improve the lives of children with pJIA.
WHAT IS THE RESEARCH TEAM DOING?
The research team is recruiting 400 children aged 2–18 with pJIA and their parents for this study. Doctors involved in the study talk to patients during appointments about the treatment options and their advantages and disadvantages. Patients and their families work with their doctors to choose among three treatment plan options:
- Start treatment with a non-biologic disease-modifying drug. They may also take a biologic medicine later, if their doctor thinks it’s necessary.
- Start treatment with both the nonbiologic and the biologic medicine.
- Start treatment with a biologic medicine only.
During clinic visits over 12 months, researchers are collecting information about patients’ pain and their ability to move. Researchers also are collecting information about how much swelling and inflammation is happening in patients’ joints.
The research team is working with patients, families, and others who are interested in pJIA to better understand how pJIA affects patients and their families, and how to measure these effects.
WHAT'S INVOLVED IN STOP-JIA?
After agreeing to be a part of the CARRA Registry, the patient/family will be asked to answer survey questions about how they are doing and feeling. Experienced pJIA patients and families chose which surveys should be used, and which ones would be important in helping families decide which medications to use in the future. Doctors and research assistants will also enter information into this registry. The patient/family will be asked similar questions about how they are feeling at their regular doctor’s visits over the next 12 months. Doctors and research assistants will continue to enter information about how the child is doing at these visits also. When the STOP-JIA study is finished, the results will be shared with patients, families and researchers. The goal of STOP-JIA is to compare the treatment plans to see which one(s):
- Work fastest in getting the child better
- Are safest
- Cause the least side effects
- Use the least steroid treatment possible
- Make pJIA completely inactive at 12 months after starting the treatment
In addition, STOP-JIA will also collect blood samples if patients are willing. The blood samples are important because they will help researchers find markers in the blood which may be able to predict how each child will respond to a treatment in the future.
PATIENT AND FAMILY INVOLVEMENT IN STOP-JIA
Only the patients and their families have the first-hand knowledge of what it is like to live with pJIA. Patients and their caregivers have partnered with doctors and researchers to plan the STOP-JIA study from the beginning. They will continue to be a part of the STOP-JIA team and will help guide researchers to make sure results will have maximum impact on improving outcomes for pJIA children, and their families. They will make sure all newly diagnosed pJIA families understand the reasons for STOP-JIA and what it means to participate. We are excited that STOP-JIA will help all of us finally understand how best to treat newly diagnosed pJIA.
WHO CAN PARTICIPATE IN STOP-JIA?
Patients 2 to 18 years of age who are diagnosed with pJIA and have not received treatment other than non-steroidal anti-inflammatory medications or limited courses of other JIA treatments, and who are being treated at one of the participating centers.