Background Whilst up to 60% of males with fragile X syndrome (FXS) meet criteria for autism
spectrum disorder (ASD), the prevalence and nature of ASD in females with FXS remains …

While there is increasing use of standardised tools to assist in determining decision-making
capacity in adults, there is limited literature evaluating these tools in children/adolescents …

Background Adults with intellectual disability (ID) are both underrepresented in research
and enrolled in studies they may not understand. Instead of facilitating research …

Neurogenetic conditions (NGC; eg, fragile X, Angelman, Prader-Willi syndromes) represent
the cause for intellectual or developmental disabilities in up to 60% of cases. With expanded …

Background Data from electronic health records (EHRs) are increasingly used in the field of
genetic research to further precision medicine initiatives. However, many of these efforts …

Background Informed consent requires that individuals understand the nature of the study,
risks and benefits of participation. Individuals with intellectual disabilities (ID) have cognitive …

Purpose The purpose of this study is to consider informed consent with those who may be
legally judged incapable of consent. Frequently individuals with traumatic brain injuries and …

In this chapter, we examine how case reports of cancer treatment for people with intellectual
and/or developmental disabilities describe their inclusion in research and medical decision …

Background Health researchers are increasingly using electronic health records (EHRs) to
study the health care needs of people with neurodevelopmental disorders (NDDs) …