Clinical Trials and Clinical Research

Clinical Trials and Clinical Research

For more information on clinical trials, please see our clinical trials page.

Clincial trials page

The Clinical Trials and Clinical Research group at Kids Neuroscience Centre provides an interface between clinical care and scientific research for a range of conditions that affect the brain, nerve and muscle. Some of these conditions are:

Muscular dystrophies (e.g. Duchenne muscular dystrophy, dysferlinopathy, facioscapulohumeral dystrophy):

  • Congenital myopathies
  • Epilepsy
  • Movement disorders
  • Neurofibromatosis
  • Neuroimmunology

This large group of disorders, many of which are life-limiting, can have devastating consequences for children, some of which are the loss of the ability to walk or perform daily living activities, and make it harder for them to do the things they want to do in their lives. Parent(s)/Carer(s) are also adversely affected a result of these debilitating conditions.

As part of the Sydney Children's Hospitals Network, Kids Neuroscience collaborates with the Neuromuscular team at Sydney Children's Hospital, Randwick to achieve common goals in clinical trials and research.

The Clinical Trials and Clinical Research group provides platform to access to large international multicentre clinical trials of novel investigational therapies and various investigator led research studies such interventions on manual cough assist, vibration plate therapy, sit to stand wheelchair program, and studies to determine the natural history of the neurological and neurogenetics conditions.

The team can enable the facilitation of clinical trial and research involving drugs, devices, registry and biobanks. The support includes but is not limited to development of protocol and study-specific documentations, formulation of clinical evaluation procedures and tools, ethics and research governance, budgets and contracts, and overall research operations.

The Clinical Trials and Clinical Research group is led by Clinical Professor Kristi Jones.

Clinical Prof Kristi Jones

Clinical Prof Kristi Jones

Kristi is the Head of the Clinical Trials team and a Staff Specialist in Clinical Genetics at CHW. Her current research interests stem from her PhD and focus on genetic diagnosis and therapeutic trials for genetic muscle disease.
Related Links

More team members

  • Daralyn Hodgson - Service Manager
  • Dr Helen Young - Neurologist/Clinical Geneticists
  • Jaisa Kuriakose - Clinical Nurse 
  • Jennifer Roberts - Physiotherapist/Evaluators
  • Jyoti Raghunandan - Neurogenetics Fellow 
  • Lisa Tang - Clinical Nurse
  • Lyndal Douglas - Genetic Counsellor
  • Lyn Ward - Occupational Therapist
  • Dr Michelle Lorentzos - Clinical Trials Medical Lead/Research Staff Specialist
  • Michelle Williams - Physiotherapist/Evaluator 
  • A/Prof Manoj Menezes - Neurologist/Clinical Geneticists
  • Dr Richard Webster - Neurologist/Clinical Geneticists
  • Sally Maspero - Clinical Nurse
  • Dr Sarah Sandaradura - Neurologist/Clinical Geneticists
  • Dr Simone Arden-Holmes - Neurologist/Clinical Geneticists
  • Whitney Caruana - Social Worker 
Last updated Thursday 2nd May 2024