Jun. 10, 2011

LFA Represents Lupus Community at Pediatric Rheumatic Drug Treatment Meeting

June 10, 2011

Today, Sandra C. Raymond, President and CEO of Lupus Foundation of America, will be representing the lupus advocacy community at a meeting of key stakeholders from the federal government, industry, and academia where they will be discussing pediatric rheumatic drug treatments and a consolidated adverse events registry. The planned outcome of this think tank meeting is a collaboration among all key stakeholders to develop a registry-based approach to prospectively capture rare events associated with childhood exposure to anti rheumatic pharmacotherapies. 

Although participants in the meeting will discuss building this registry first for the Juvenile Idiopathic Arthritis (JIA) patient community, Sandra will represent the lupus community. Companies developing biologics for use in lupus are attending this meeting.  And although companies will first obtain approval for new treatments in adults, once they receive approval for a new treatment, they will conduct trials in children. It is important for the lupus community to begin thinking about and planning for the near future. 

The Centers for Disease Control and Prevention (CDC), the Agency for Healthcare Research and Quality (AHRQ), the National Institutes of Health (NIH), and the Food and Drug Administration (FDA) will be present at the meeting along with representatives from more than eight companies developing treatments for various autoimmune and rheumatic diseases.  Also present will be representatives from overseas regulatory agencies as well as the leaders of the pediatric rheumatology networks both in the U.S. (Childhood Arthritis & Rheumatology Research Alliance) and abroad (Pediatric Rheumatology International Trials Organization).


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