Jacinta Saldaris
Senior Research Officer, Child Disability
BSc (Hons), PhD
jacinta.saldaris@thekids.org.au
Dr Jacinta Saldaris is an early career researcher, graduating from The University of Western Australia School of Human Sciences with a Doctor of Philosophy (2020). She is a Senior Research Officer in the Child Disability Team for the International CDKL5 Clinical Research Network (ICCRN), an NIH-funded project that comprises a collaboration with the University of Colorado, the Children’s Hospital of Philadelphia and CDKL5 Centre of Excellence Clinics. The project aims to develop and validate a suite of outcome measures to be used in disease modifying clinical trials for children with CDKL5 deficiency disorder (CDD) and other Developmental Epileptic Encephalopathies (DEEs). This work is essential for strong clinical trials for rare disorders and is making a critical contribution to ensuring excellent evaluations of promising therapies on the horizon.
Jacinta’s research experience includes rare disorders, neurodevelopmental disorders, physical activity and exercise, and mental health. Her research envisions that children with disability and their families live with better health and quality of life, generating high impact research through a collaborative approach. Jacinta has presented her research at multiple conferences, most recently being the 2022 American Epilepsy Society Conference held in Nashville. She received the 2022 Loulou Foundation Junior Fellowship Award for her work with CDD and was a finalist for the Young Investigator Award for the Exercise and Sports Science Australia Research to Practice Conference in 2021.
Published research
Psychometric evaluation of clinician- and caregiver-reported clinical severity assessments for individuals with CDKL5 deficiency disorder
The CDKL5 Clinical Severity Assessment is a comprehensive, content-validated measurement tool capturing the diverse challenges of cyclin-dependent kinase-like 5 deficiency disorder, a genetically caused developmental epileptic encephalopathy. The CCSA is divided into clinician-reported and caregiver-reported assessments. The aim of this study was to evaluate the factor structure of these measures through confirmatory factor analysis and evaluate their validity and reliability.
Parent-reported outcome measures evaluating communication in individuals with rare neurodevelopmental disorders: A systematic review
Communication impairments are a leading concern for parent caregivers of individuals with rare neurodevelopmental disorders. Clinical trials of disease modifying therapies require valid and responsive outcome measures that are relevant to individuals with RNDDs. Identifying and evaluating current psychometric properties for communication measures is a critical step towards the selection and use of appropriate instruments.
Communication of individuals with CDKL5 deficiency disorder as observed by caregivers: A descriptive qualitative study
CDKL5 deficiency disorder (CDD) is a genetically caused developmental epileptic encephalopathy that causes severe communication impairments. Communication of individuals with CDD is not well understood in the literature and currently available measures are not well validated in this population. Accurate and sensitive measurement of the communication of individuals with CDD is important for understanding this condition, clinical practice, and upcoming interventional trials.
Adapting a measure of gross motor skills for individuals with CDKL5 deficiency disorder: A psychometric study
Validated measures capable of demonstrating meaningful interventional change in the CDKL5 deficiency disorder (CDD) are lacking. The study objective was to modify the Rett Syndrome Gross Motor Scale (RSGMS) and evaluate its psychometric properties for individuals with CDD.
The development, content and response process validation of a caregiver-reported severity measure for CDKL5 deficiency disorder
CDKL5 Deficiency Disorder (CDD) is a severe X-linked developmental and epileptic encephalopathy. Existing developmental outcome measures have floor effects and cannot capture incremental changes in symptoms. We modified the caregiver portion of a CDD clinical severity assessment (CCSA) and assessed content and response-process validity.
Validating the Communication and Symbolic Behavior Scales–Developmental Profile Infant–Toddler Checklist (CSBS–DP ITC) Beyond Infancy in the CDKL5 Deficiency Disorder
CDKL5 deficiency disorder (CDD) results in early-onset epilepsy and lifelong cognitive and motor impairments. With no validated measure for communication in CDD, this study evaluated the psychometric properties of the Communication and Symbolic Behavior Scales-Developmental Profile Infant Toddler Checklist.
Education and Qualifications
The University of Western Australia
- APA PhD Scholarship, School of Human Sciences (2015 - 2019)
- Bachelor of Science (Honours) (2014) - First Class Honours
- Bachelor of Science (2011 - 2013)
Awards/Honours
- Loulou Foundation 2022 Junior Fellowship Award