For decades, the research community has called for participant information sheets/consent forms (PICFs) to be improved. Recommendations include simplifying content, reducing length, presenting information in layers and using multimedia. However, there are relatively few studies that have evaluated health consumers' (patients/carers) perspectives on the type and organisation of information, and the level of detail to be included in a PICF to optimise an informed decision to enter a trial. ...

• 1. Telethon Kids Institute
• Our research
• Reports and Findings
• 2022
• December 2022

We compared the ability of Ars, to standard oscillatory outcomes, to determine respiratory disease and differentiate responses to inhaled bronchial challenges. ...

• 1. Telethon Kids Institute
• Our research
• Reports and Findings
• 2012
• January 2012

HRV-1B infection directly alters human airway epithelial TJ expression leading to increased epithelial permeability potentially via antiviral response of IL-15 ...

• 1. Telethon Kids Institute
• Our research
• Reports and Findings
• 2016
• October 2016

Early assessment and diagnosis of FASD are crucial in providing therapeutic interventions that aim to enhance meaningful participation and quality of life for individuals and their families, while reducing psychosocial difficulties that may arise during adolescence and adulthood. Individuals with lived experience of FASD have expertise based on their own lives and family needs. Their insights into the assessment and diagnostic process are valuable for improving service delivery and informing the provision of meaningful, person- and family-centered care. To date, reviews have focused broadly on the experiences of living with FASD. ...

• 1. Telethon Kids Institute
• Our research
• Reports and Findings
• 2023
• May 2023

This systematic review aimed to identify the most important social, environmental, biological, and/or genetic risk factors for intellectual disability. ...

• 1. Telethon Kids Institute
• Our research
• Reports and Findings
• 2022
• August 2022

disease-deconvolution" identified associations between the parasite-brain interactions and epilepsy, movement disorders, Alzheimer's disease, and cancer. ...

• 1. Telethon Kids Institute
• Our research
• Reports and Findings
• 2017
• September 2017

Jenefer Sarra Blackwell Jamieson JM SE BSc with First Class Honours, PhD, DSc, FMedSci, FAA BSc (Hons) MSc PhD Head, Genetics & Health Senior Research Fellow Jenefer.Blackwell@telethonkids.org.au sarra.jamieson@telethonkids.org.au Head, Genetics & ...

• 1. Telethon Kids Institute
• Our research
• Reports and Findings
• 2016
• March 2016

Our work has identified a clinically relevant host-derived factor that may participate in shaping early events in the aetiology of CF respiratory disease ...

• 1. Telethon Kids Institute
• Our research
• Reports and Findings
• 2020
• May 2020

Pulmonary inflammation in surveillance bronchoalveolar lavage has a cumulative effect on structural lung disease extent, more so than infection ...

• 1. Telethon Kids Institute
• Our research
• Reports and Findings
• 2019
• July 2019

Young people who have been involved in the child protection system are at increased risk for mental health events and diagnoses ...

• 1. Telethon Kids Institute
• Our research
• Reports and Findings
• 2019
• July 2019

These findings indicate that early CF lung disease is characterized by an increased mucus burden and inflammatory markers without infection or structural lung disease ...

• 1. Telethon Kids Institute
• Our research
• Reports and Findings
• 2019
• April 2019

The typical number of visits to health professionals by children with mental disorders during a 12-month period is relatively small ...

• 1. Telethon Kids Institute
• Our research
• Reports and Findings
• 2018
• October 2018