Research Studies and Clinical Trials Search
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A tool used to collect information about Juvenile Idiopathic Arthritis
PR-COIN is a registry that focuses on improving the quality of the care patients of all ages with juvenile idiopathic arthritis (JIA) receive. Data is collected from the participant's rheumatology appointments and entered into a registry database. With the data collected...
PR-COIN is a registry that focuses on improving the quality of the care patients of all ages with juvenile idiopathic arthritis (JIA) receive. Data is collected from the participant's rheumatology appointments and entered into a registry database. With the data collected rheumatologists around the country can work on improving the standard of care they give to their patients. This study is designed to improve disease control, improve quality of life for patients, support families in managing their child's condition, and many other quality improvement objectives.
A tool used to collect information about juvenile rheumatic diseases
The CARRA Registry is a database that monitors patients for 10 years and is limited to patients with rheumatic conditions under the age of 18 years old depending on their diagnosis. The information collected from participants is gathered from their rheumatology appointments every...
The CARRA Registry is a database that monitors patients for 10 years and is limited to patients with rheumatic conditions under the age of 18 years old depending on their diagnosis. The information collected from participants is gathered from their rheumatology appointments every 6 months, with some short questionnaires for patients and families to answer about their overall health. With the data collected rheumatologists around the country can evaluate effectiveness of medication and monitor patient health.
Chronic Anterior Uveitis: A study testing levels of Humira in the blood for uveitis treatment
This study is for children: •Under 18 years of age • Must have chronic anterior uveitis • Must be starting Adalimumab (brand name Humira) for active uveitis...
This study is for children: •Under 18 years of age • Must have chronic anterior uveitis • Must be starting Adalimumab (brand name Humira) for active uveitis • No previous Adalimumab treatment can have occurred The purpose of this study is to understand whether blood levels of adalimumab (brand name: Humira) can be used to predict how well the uveitis will respond to adalimumab. Patients who participate will have blood samples and questionnaires collected at 2, 4, and 6 months after starting Adalimumab. Both a rheumatology and ophthalmology exam must be completed during those study visits.
Juvenile Idiopathic Arthritis (JIA): A study of tears and blood markers for JIA and uveitis
The longitudinal tears portion of this study is for: • Juvenile Idiopathic Arthritis without Uveitis (JIA-no-U): Diagnosed with JIA (RF-negative, oligoarticular, psoriatic, or undifferentiated) within the last four years and are less than 18 years of age at the time of...
The longitudinal tears portion of this study is for: • Juvenile Idiopathic Arthritis without Uveitis (JIA-no-U): Diagnosed with JIA (RF-negative, oligoarticular, psoriatic, or undifferentiated) within the last four years and are less than 18 years of age at the time of enrollment • or Juvenile Idiopathic Arthritis associated Uveitis (JIA-U): diagnosed with JIA (RF-negative, oligoarticular, psoriatic, or undifferentiated) and uveitis and are less than 18 years of age at the time of enrollment The one time DNA collection for genetics portion of this study is for: • JIA-no-U patients who must be 1) diagnosed with JIA ≥ 4 years and 2) have at least one ophthalmology exam performed after having JIA ≥ 4 years. • or JIA-U patients must be 1) diagnosed with JIA, 2) diagnosed with uveitis, and 3) have at least one ophthalmology exam performed confirming uveitis diagnosis. The main reason for this research study is to help researchers to learn more about children with juvenile idiopathic arthritis (JIA) and/or uveitis (inflammation of the eye), and to help researchers identify who is at the greatest risk for uveitis development. Researchers also hope to discover whether certain markers in a child's tears and blood can better help to determine one's risk for developing uveitis. Investigators hope that early detection of uveitis, regular monitoring for eye disease and complications, and appropriate, timely therapy can improve the quality of life and long-term outcomes of children with arthritis and/or uveitis.
Juvenile Spondyloarthritis: A study to Compare the Likelihood of Disease Flare Associated with Continuing, Tapering, or Stopping Medication in Children
• 8-21 years of age • patients must have been diagnosed with Juvenile Spondyloarthritis • patients must be currently taking a TNFi medication (Adalimumab, Certolizumab, Etanercept, Golumumab, Infliximab) • patients must not have active disease for a minimum of 6 months...
• 8-21 years of age • patients must have been diagnosed with Juvenile Spondyloarthritis • patients must be currently taking a TNFi medication (Adalimumab, Certolizumab, Etanercept, Golumumab, Infliximab) • patients must not have active disease for a minimum of 6 months Patients who participate will be randomly assigned to either continue their current medication schedule, taper down their current medication schedule, or completely stop their medication. The patient will follow their routine care schedule approximately every 3 months, and monitored for any flare of disease.
Non-infectious Uveitis: A study trying to predict the response of Methotrexate on non-infectious uveitis using eye testing
This study is for those who are: • less than 18 years of age • patients must have been diagnosed with non-infectious uveitis • patients must be starting Methotrexate for treatment of non-infectious uveitis...
This study is for those who are: • less than 18 years of age • patients must have been diagnosed with non-infectious uveitis • patients must be starting Methotrexate for treatment of non-infectious uveitis The main reason for this research study is to improve the way of selecting treatment for Non-infectious uveitis (NIU) patients who started to have NIU as a child. The study team will look at several different items to improve this process including demographics, eye exams, physical exams, imaging results, blood test results, and other potential risk factors. Pediatric NIU leads to vision-threatening complications or permanent vision loss in 50% of affected children. Methotrexate is the usual first chosen medication that works by suppressing the immune system.
Pediatric Joint Hypermobility and Ehlers Danlos Syndrome: Patient quality of life and symptoms survey
This study is for children: • 5-22 years of age • Patient must have Pediatric Joint Hypermobility or Ehlers Danlos Syndrome • Patient must be seen in the EDS clinic at Children's Mercy or the Rheumatology clinic with Dr. Jones...
This study is for children: • 5-22 years of age • Patient must have Pediatric Joint Hypermobility or Ehlers Danlos Syndrome • Patient must be seen in the EDS clinic at Children's Mercy or the Rheumatology clinic with Dr. Jones This study is being done to understand what other conditions are commonly seen in patients who have Pediatric Joint Hypermobility or Ehlers Danlos Syndrome. Surveys are sent to families asking about patient pain levels, quality of life, fatigue, and gastrointestinal symptoms. The study team will also review the patient's chart to see what other diagnoses are affecting the patient alongside joint hypermobility and Ehlers Danlos.