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The diagnostic odyssey for children living with a rare disease – Caregiver and patient perspectives: A narrative review with recommendations

Children living with a rare disease often endure a lengthy journey to diagnosis, commonly referred to as a diagnostic odyssey. This journey significantly impacts their physical, mental and financial wellbeing, in addition to that of their families. The diagnostic odyssey is often characterised by anxiety and stress surrounding the uncertainty of the future. This is experienced by the patient as well as by the family.

Difficult journey for Tahlea after fight back from disease

At just six months old, Tahlea Dalgety was flown from Geraldton to Perth with a slim chance of survival after contracting meningococcal disease.

A decade of data confirms observation is safe for most newborns with neuroblastoma

A landmark study led by Dr Hetal Dholaria, The Kids Research Institute Australia researcher and Perth Children’s Hospital Oncologist, has confirmed that a “wait and watch” approach for newborns diagnosed with neuroblastoma is not only safe, but effective over the long term.

Pain and recovery profiles following common orthopaedic surgeries in children

Little evidence exists on the postoperative trajectory after paediatric orthopaedic surgery. Pain and behavioural disturbance can have short- and long-term impacts on children and their families. An improved understanding of procedure-specific postoperative trajectories can enhance recovery. The primary outcome was to examine the duration and severity of postoperative pain experienced by children undergoing 10 commonly performed orthopaedic procedures.

National study to assess impact of social media ban on families and kids

A unique national study to examine the impact of the Federal Government’s social media ban on families is being undertaken by The Kids Research Institute Australia, in collaboration The University of Western Australia and Edith Cowan University.

Current post-tonsillectomy analgesia practices among Australian and New Zealand anesthetists, and opinions on non-opioid alternatives

Children experience significant pain following extracapsular tonsillectomy surgery, and while opioids are often prescribed to treat this, clinicians may be wary of their adverse side effects, leading to variation in practice. There is a need for improved post-tonsillectomy pain management in children. 

Intranasal phage therapy overcomes antibody neutralization challenges in pulmonary Pseudomonas aeruginosa infections

Phage therapy is a promising approach against multidrug-resistant infections, yet systemic administration can lead to incomplete cures. We investigated the distribution, immune responses, and efficacy of the therapeutic phage KPP10 delivered via intranasal or intraperitoneal routes in murine Pseudomonas aeruginosa lung infection models.

The feasibility of using electrical impedance tomography to guide positive pressure airway clearance in children with cystic fibrosis and tracheobronchomalacia

Positive expiratory pressure devices are frequently used for airway clearance in children with cystic fibrosis and tracheobronchomalacia. This study aimed to establish if electrical impedance tomography is a feasible measure to titrate pressures in non-sedated children.

Triple triumph for The Kids at 2025 Premier’s Science Awards

Three researchers from The Kids Research Institute Australia were recognised as being among Western Australia’s brightest and most innovative scientific minds at last night’s 24th Premier's Science Awards.