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A new era of participatory research

Via Patrick McGurrin

Research supporting treatment and therapies for people with developmental disabilities, such as Down and Fragile X syndrome, continues to be an area of active investigation. However, a current problem with clinical trials associated with this line of research is the means to subject participation. Research participation is generally explained using lengthy documentation that can often be burdensome and overwhelming. This paperwork is crucial to the experimental consent, as it outlines what the experiment will entail, what the participant’s role will be, what the possible side effects are, if any, etc. In the past, this documentation was handled by a parent or other guardian if found to be too demanding for the participant. However, as Brian Skotko of the Down Syndrome Program at Massachusett’s General Hospital stated, “this is an era of participatory research.”

The era of participatory research now gives potential participants full control over their participation in the study. The new standards for clinical trials includes a novel structure to the experimental documentation that is accessible to the participants. Both the participant and their parent or guardian must approve consent forms, which now encapsulate written documentation, flipcharts, animated videos, and picture-based forms. These new consent documents aim to ensure that participants understand fully their role of the research, as well as the potential outcomes and side effects.

People with cognitive disabilities, their families, and the researchers responsible for conducting these investigations have supported the updates to the experimental approach. These supported changes are hopeful to alleviate a longstanding ethical concern about the involvement of people with cognitive and developmental disabilities in research. The transformation in experimental design encourages a new era of drug trials where the participants and researchers work together to further knowledge of new treatments and therapies for people with cognitive and developmental disabilities.