Spring 2004                                    CARES Foundation, Inc.
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Participating in CLINICAL TRIALS

Reprinted with permission from the National Organization of Rare Diseases Newsletter

 

A study from the Rainbow Babies and Children’s Hospital in Cleveland, Ohio reveals that parents of children who participate in clinical trials generally do not understand the concept of experimental treatments. The study of 137 parents of children with leukemia was published in JAMA. When children were randomly assigned to an experimental treatment or the standard treatment, even though this was explained to them 50 percent of the parents did not fully understand the concept. Nor did they understand that the effectiveness of experimental treatments was unproven, nor that a computer and not a doctor would make the decision about which treatment the child would get. Parents are supposed to give their informed consent before a child participates in research, but apparently many parents continue to expect that their child will benefit from the experimental treatment.

 
  
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