Survey: Parent decision-making to inform Fragile X syndrome clinical drug trials

New survey study to investigate the decision-making process among parents considering enrolling their child with FXS in a clinical drug trial. Fill out a questionnaire which will ask you about factors related to deciding to enroll your child in a clinical drug trial, your views on clinical trials more generally, and potential barriers to participating in clinical trials. It will take you about 20 minutes.

It doesn’t matter if you know a lot or very little about clinical drug trials for FXS, or if you have never thought about enrolling your child, we value everyone’s opinion.

This announcement is posted as a courtesy by the National Fragile X Foundation (NFXF) on behalf of the National Institutes of Health. The announcement and the parties conducting and sponsoring the research meet guidelines established by the NFXF regarding relevancy and appropriateness to Fragile X. The NFXF takes no position and makes no claims as to the potential benefits of the study including those studies involving medications, and cannot be responsible for any outcomes, lack of outcomes or unintended side effects. If interested in participating in this research, it is your responsibility to use the contact information on this announcement.