Dr Caitlin Gray

IDEA (Intellectual Disability Exploring Answers) Database

IDEA is one of the few population-based resources in the world dedicated to intellectual disability. The IDEA database contains information on all children born in Western Australia since 1983 who have been identified with having an intellectual disability. Individuals with autism spectrum disorder, both with and without intellectual disability, are also included in the database. Deidentified information is accessed from the Department of Communities WA, the WA Department of Education, and the National Disability Insurance Agency (NDIA) to create the database. IDEA can be linked to other datasets to facilitate research into the determinants, outcomes and service needs of children and adults with intellectual disability. Researchers can apply for such linked data, available in a de-identified format under approval from an ethics committee.

Using Population Data to Explore Sibling Profiles in Families of Children With and Without Neurodevelopmental Conditions

Sibling profiles, including sibling status (only-child or sibling) and sibling characteristics (sibling size, birth order, and sex), can impact on lived experiences and social interactions, and operate as protective or risk factors for a wide range of health and well-being indicators and outcomes. Using population-based data linkage to disability-specific databases, sibling profiles were compared between families of children with and without neurodevelopmental conditions.

The application of population data linkage to capture sibling health outcomes among children and young adults with neurodevelopmental conditions. A scoping review

Siblings of children with neurodevelopmental conditions have unique experiences and challenges related to their sibling role. Some develop mental health concerns as measured by self-reported surveys or parent report. Few data are available at the population level, owing to difficulties capturing wide-scale health data for siblings. Data linkage is a technique that can facilitate such research. 

Young adult reflections on life experiences following preterm birth: a cross-sectional descriptive study

Increasingly, preterm-born children are entering adulthood as survival at earlier gestational ages improves. However, there is little understanding of the lived experience in preterm-born adults.

Young adult outcomes following premature birth: A Western Australian experience

Childhood outcomes following preterm birth are widely published, however long-term adult outcomes are less well described. We aimed to determine the quality of life and burden of co-morbidities experienced by preterm-born young adults in Western Australia.

Down syndrome or Rett syndrome in the family: Parental reflections on sibling experience

Siblings of children with intellectual disability have unique family experiences, varying by type of disability.