Community views on medication use in fragile X syndrome

Abstract Objectives The difficulties inherent in conducting clinical trials in fragile X syndrome (FXS) mean that investigators must be judicious in selecting which potential therapeutic interventions to trial. To inform the development of future trials we set out to examine what the attitudes of families are to taking medication, and to participating in medication trials, including what their priorities for intervention are. Results Seventy three people completed the questionnaire. The majority reported being interested in taking part in medication trials. Over 50% of respondents were either unaware or had no opportunity to participate in trials. The priorities for future trials were anxiety, learning, language, attention and social behaviour. Attention was more commonly listed as a priority for children, whereas social behaviour was more common in adults.