Public health research is often hindered by an incomplete or non-representative sample as a result of non-participation. When we create policies, develop interventions, and form our knowledge of a subject around a non-representative sample, we are unable to fairly represent the interests of the entire population. With the Pediatric Autism Research Cohort Manitoba Sample (PARCMBss) study, we aim to identify any possible underrepresentation in the PARC participant group, so we might acknowledge these differences and use this knowledge to improve recruitment processes, not only for PARC, but for other future studies.
This study is a branch from the larger PARC study and aims to investigate who we might be missing from the PARC sample, and how we can better include them in PARC so their voices may be added to our research. We are collecting data from PARC participants and other children that are of a similar age that received an Autism diagnosis over a similar time period to PARC participants. We are looking to compare the characteristics of these two groups, including general demographic information (i.e., age, rurality), clinical history (i.e., the presence of additional diagnoses), and family history to identify any noticeable differences, determine if certain factors may influence interest and participation in research, and investigate how these factors may interact with each other. We hope that this information will give us insight into what influences research participation in Manitoba and help adapt our research methodologies to better include Manitoban families.