NCHR Statement on Transparency of Children’s Clinical Trials

January 24, 2023

A new report finds that 3,627 American children participated in clinical trials whose results remain hidden. These children include:
  • 166 infants recovering from heart surgery;
  • 130 boys with incurable Duchenne Muscular Dystrophy;
  • 110 prematurely born babies;
  • 974 children with ADHD.
This is not ‘only’ unethical – it’s illegal. Dr. Diana Zuckerman, president of the National Center for Health Research, explains: “This new analysis indicates that studies of children are not being published as required. When any adult or child participates in a clinical trial, they are taking a risk for the greater good, but if the results are not made public, those studies are of no help to anyone. NIH should enforce the legal requirement that they cut off funding if study results are not made public, but they haven’t done that even once. Our next step is to work with Congress to fix this situation.”