Grant: Planning and Dissemination Grant - Institute Community Support

Congenital CMV infection (cCMV) is the most common of all infections with which children can be born. Despite it being relatively unknown among the general public, cCMV is the most common non-genetic cause of hearing loss in children and the second most common cause of developmental delays in children. In July 2019, Newborn Screening Ontario launched an Enhanced Hearing Screen which includes a universal offer of cCMV screening on the newborn dried blood spot; this program is the first of its kind in the world, and scientists, doctors, public health administrators, and advocacy groups with interest in cCMV eagerly await the results of this program. The Children's Hospital of Eastern Ontario (where NSO is housed) successfully applied to host the US CMV Public Health and Policy Conference (CMV 2020). This biannual meeting of researchers, policy makers and community (cCMV parents) advocates has never before been held outside of the US, and thus represents an amazing opportunity for participation of Canadian cCMV parents and community advocates. The Canadian CMV Foundation is a national, non-profit organization that has worked for the past decade to raise awareness for prevention and diagnosis of cCMV and to support families affected by this disease. We are proposing to hold a cCMV parent-advocate workshop in association with CMV 2020 in order to take advantage of the wealth of expertise and learning opportunity for Canadian parents. The workshop will focus on knowledge translation & dissemination, including clinical aspects of cCMV, past successes in Canada and the US with respect to advocacy for improved screening and services, and networking & planning for parent advocates to be able to move forward the agenda of cCMV programs and family support in every Canadian province. This proposal represents an equal partnership between CHEO/NSO and the Canadian CMV Foundation, and will be co-sponsored by both organisations.