Community-based participatory approaches to neurogenetic syndrome research

Individuals with neurogenetic syndromes comprise a large subset of the population of people with intellectual disability. Members of neurogenetic syndrome communities, including self-advocates, caregivers, family members, and service providers, can be valuable partners in translational research and its application to intervention and advocacy. This paper examines the applicability of a community-based participatory research approach, one characterized by equitable involvement and shared responsibility of community members, practitioners, and researchers in conducting research with neurogenetic syndrome communities. We first provide a rationale for enhancing academic research partnerships with neurogenetic syndrome communities. We then describe how a community-based participatory research framework can be applied to conducting neurogenetic syndrome research with an examination of nine common principles and seven steps to conducting this type of work. We conclude by discussing specific challenges to conducting community-based participatory research with neurogenetic syndrome communities and suggest opportunities for future directions of this work.