This is wonderful news - CARRA & Arthritis Foundation are working together in order to keep a record/listing of all the children like Charlotte on TNF inhibitors so they can monitor them. YAY!!!!!!
Arthritis Foundation Comment On Food And Drug Administration Ongoing SafetyReview Of Tumor Necrosis Factor (TNF) Blockers
10 Jun 2008
The Food and Drug Administration (FDA) issued an early communication on June4, 2008 regarding an ongoing safety review of Tumor Necrosis Factor (TNF)Blockers (marketed as Remicade, Enbrel, Humira, and Cimzia) and the possibleassociation between the use of these medicines and the development oflymphoma and other cancers in children and young adults.
The FDA is investigating approximately 30 reports of cancer in children andyoung adults who were treated with TNF blockers for Juvenile Idiopathic Arthritis (JIA), Crohn's disease or other diseases.
JIA is the new name forwhat was called Juvenile Rheumatoid Arthritis (JRA). These reports were submitted to FDA's Adverse Event Reporting System over a ten-year interval,beginning in 1998 after approval of the first TNF blocker, and extendingthrough April 29, 2008.
The Arthritis Foundation supports the Food and Drug Administration's furtherstudy into the risk of cancer conferred by treating JIA with TNF blockertherapy. At this time, the increased risk of cancer does not seem to belarge especially when compared to the risk of disability from untreatedjuvenile arthritis.
The Arthritis Foundation recommends that adult patients and parents ofchildren being treated with TNF blockers work closely with their physicians to understand the risks and benefits clearly. The concern over increased risk of adverse side effects of these powerful drugs emphasizes the need fora national registry for patients with JIA and a network of collaborating treatment centers so that full information can be acquired about the risks and benefits of the new treatments that are becoming available.
The Arthritis Foundation is working toward this goal through its support forthe Childhood Arthritis & Rheumatology Research Alliance (CARRA). CARRA is aNorth American organization of pediatric rheumatologists who have joined together to answer critical clinical research questions and determine thebest possible treatment options for childhood arthritis and other childhoodrheumatic diseases.
The Arthritis Foundationhttp://www.arthritis.org/