The Arthritis Foundation is funding a new program to help support the Childhood Arthritis and Rheumatology Research Alliance (CARRA) and the CARRA Registry (registry). Eight sites were selected to receive funding to support the salary of a dedicated registry research coordinator for one year. Until now, some sites have been short-handed for this important research position.
Researchers collect information through studies on many pediatric patients with rheumatic diseases over time and store it in the registry. Research coordinators play a critical role in making sure research studies run smoothly. Those supported by this program will:
Continue reading Funding Juvenile Research Coordinators Across the County
Every family whose child receives a diagnosis of a rheumatic disease (such as juvenile idiopathic arthritis (JIA), lupus, dermatomyositis and scleroderma) wants the best treatment and care. The doctors who treat your child also want to provide the best treatment and care for their patients. Over the past 20 years, new discoveries and medicines have greatly improved the lives of children with rheumatic diseases. Many new treatment choices are good, but how can we know which medication will work the best for each child? What if we can learn the answer to this question by simply collecting information on how usual care and treatment work for a lot of children with the same disease?
Continue reading A New Way to Compare How Different Treatments Work for Patients with Pediatric Rheumatic Diseases
Now, more than ever, we need you to become involved with research about your disease. Without the participation of patients and parents, research cannot advance toward a cure.
Specifically, in Juvenile Arthritis (JA), parents and patients play a critical role in research – you are experts when it comes to the issues that are important to you or your child’s health and daily quality of life.
Continue reading Patients Play Vital Role in Research – And it’s Not What You Think!
Dr. Timothy Beukelman, a pediatric rheumatologist, has been looking at the safety of a group of drugs that are successfully used to treat children with juvenile idiopathic arthritis (JIA). One of his current research projects, called “Tumor Necrosis Factor (TNF) Inhibitors and the Risk of Malignancy in the Treatment of JIA”, was presented at the 2016 ACR conference in Washington, DC.
Continue reading Pediatric Rheumatologist & Researcher Dr. Timothy Beukelman Evaluates Cancer Risk for JIA Patients Taking TNF Inhibitors