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What is the Community Consultation Team?

The NCGENES team includes a Community Consultation Team (CCT). The CCT is a team comprised of diverse individuals who all have experience with raising a child with special needs. Each member has first-hand knowledge of the obstacles faced when navigating the health system to get their child the care he or she needs.

An overarching goal of NCGENES is to increase the representation of research participants from diverse backgrounds, from underserved and underrepresented communities. The NCGENES CCT is a key part of making that goal a reality. The CCT has already played a critical role in making sure NCGENES can reach a diverse population of research participants by reviewing the materials that NCGENES participants will encounter. This includes recruitment materials, participant surveys, and educational materials. They have provided an insider’s perspective on how parents of children with special needs might respond to to both the content and presentation of these materials. Their recommendations have helped NCGENES researchers improve the study materials and modify the study design so that the goal of recruiting and retaining diverse individuals to participate in the study can be realized.

The CCT will continue to provide guidance and insight from a parent’s perspective throughout the NCGENES study.