Hundreds of patients and their families, FDA staff, industry leaders, and researchers convened in Washington, D.C. to participate in the externally-led JIA Patient-Focused Drug Development (PFDD) meeting on August 2, 2018. The meeting served as a kickoff event to the 4-day Arthritis Foundation JA Conference East. Juvenile idiopathic arthritis (JIA) is the most common type of juvenile arthritis (JA). In many children, it’s a life-long illness with a high risk of disease and treatment-related morbidity. There is no cure, and treatments for children are limited.
This meeting, which is part of our strategy to help find a cure for this serious disease, provided an opportunity for patients, patient advocates, and caretakers to talk about the symptoms and issues that matter most to them. JIA parents and their families shared information about the impact of JIA on daily life, the symptoms that are most challenging, experiences with currently available treatments and the need for new and different treatments.
JIA patients and their families were invited to attend in-person and via a live webcast. They shared their experiences by responding to a live poll and discussion questions. Three patients and nine parent panelists told stories about how JIA impacts their daily lives and discussed the wide range of treatments they have tried.
Continue reading Powerful Testimony at the 2018 JIA Patient-Focused Drug Development Meeting
Join us at the externally-led JIA Patient-Focused Drug Development meeting
We are hosting, along with our partner, the Childhood Arthritis and Rheumatology Research Alliance (CARRA), the Juvenile Idiopathic Arthritis Patient-Focused Drug Development (PFDD) meeting. This meeting, driven by our patients and caregivers, will provide the U.S. Food and Drug Administration (FDA) and industry personnel with input directly from you on how this disease affects your life, your experiences with current treatments, and the need for newer and better treatments.
Continue reading Your Disease, Your Voice
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!
Juvenile arthritis (JA) affects nearly 300,000 kids and families in the United States. Of all the forms of arthritis, juvenile idiopathic arthritis (JIA) is the most common type of arthritis in children. For almost seven decades, the Arthritis Foundation has upheld our unwavering promise to assist them and their caregivers. In an ongoing effort to include the patient voice in everything we do, we’re asking you – patients, parents, loved ones and others with a connection to JIA – to tell us what JIA research matters to you.
Continue reading Become a PARTNER to Help Find a Cure
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
Women who have juvenile idiopathic arthritis (JIA) – an umbrella term for several types of arthritis that develop in childhood appear to be at higher risk of developing heart disease than women who do not have inflammatory arthritis, according to a new study out of Canada. For years, researchers have examined the link between inflammatory forms of arthritis, such as rheumatoid arthritis (RA) or lupus, and an increased risk of heart disease. But no one had studied heart health in adults with JIA (another inflammatory form of arthritis), and little was known about the health effects of lifelong JIA during pregnancy.
Continue reading Women With Juvenile Arthritis May Be at Higher Risk of Heart Disease