Facilitating individuals and families affected by fragile X syndrome to participate in medication trials.
S E A EleyAndrew G McKechanieS CampbellAndrew C StanfieldPublished in: Journal of intellectual disability research : JIDR (2020)
Many of the factors, which potentially negatively influence participation in a clinical trial for FXS, could be mitigated in relatively simple ways. Easily accessible information, particularly about safety issues, the research team and the trial environment should be standard practice. Desensitisation programmes for blood testing, provision of different preparations of medication (e.g. liquid) and use of a combination of local, remote and site visits to reduce travel and time should also be considered.