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Participating in Research

As the parent of a child with a neurodevelopmental disorder, you must make the decision for your child about whether or not to participate in a research study. One issue to consider is how the research study may or may not help your child on a personal level. Another issue to consider is how the results of the research study could potentially help others in the future who have a health problem similar to your child’s.

It can be difficult to make an informed decision if you do not know the right questions to ask. We recommend asking some or all of the following questions before deciding to have your child participate in a research study:

  • Why is the research being done?
  • What will happen to my child in the research study?
  • How will my child benefit from the research?
  • How could the research hurt my child?
  • What other options do I have if I do not want my child to participate in the research study?
  • With whom will the researcher share my child’s personal information?
  • How long does the research study last?
  • What happens if I decide that I want my child to stop participating in the study?
  • Whom should I call if I have a question about the research study?
  • Will I have to pay for any part of the research study?
  • Who can help me answer questions from my child’s insurance company or health plan agent?
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