The Province of Ontario Neurodevelopmental Disorder Network (POND) is a partner research program of the Ontario Brain Institute and is dedicated to addressing the urgent need for new and better targeted therapies in an effort to improve the long-term outcomes for children with neurodevelopmental disorders, including: Attention Deficient Hyperactivity Disorder, Autism Spectrum Disorder, Down Syndrome, Fragile X, Intellectual Disability, Obsessive Compulsive Disorder, Rett Syndrome, and Tourette Syndrome. Central to improving outcomes for people with one or more neurodevelopmental disorders is ensuring that the research is focused on their needs. The Neurodevelopmental Disorder Priority Setting Partnership (PSP) was set up to identify research questions that are relevant to patient, family and clinician. This approach provided a unique opportunity to identify uncertainties that are common, as well as unique, across eight neurodevelopmental disorders, and help to ensure that the POND research program is addressing research questions that are relevant to patients and families. The Neurodevelopmental Disorder PSP was conducted based on the guidelines of the James Lind Alliance (JLA). Through standardized methodology established by the JLA, PSPs allow the community to work together to identify and prioritize the Top 10 uncertainties, or unanswered questions, that research should address. Involving others through PSPs allow for new and different perspectives in research, and ensures research is conducted on topics that matter most to the community. The Top 10 uncertainties identified through this PSP are publicly available (http://braininstitute.ca/nddpriorities and http://www.jla.nihr.ac.uk/priority-setting-partnerships/neurodevelopmental-disorders-canada/).
Interagency Autism Coordinating Committee (IACC)
Autism Research Database (AFD)
