ALS Research Centers - Australia

General Information	Research and Trials
Caulfield - Bethlehem Hospital Outpatient Assessment Clinic 476 Kooyong Road Caulfield, Victoria 3162 Australia Phone: 61-3-9595-3355 Fax: 61-3-9596-3576 Email: MNDConsultancy@ bethlehem.org.au Medical Director: Dr. Susan Mathers Specialty: Progressive neurological disorders Other medical specialities: Multidisciplinary specialist team (community nursing, neuropsychology, occupational therapy, physiotherapy, social work, speech pathology) Other diseases/conditions: Other progressive neurological disorders Other information: Bethlehem Hospital's Motor Neurone Disease Consultancy is a clinical information service that provides individualised consultation, peer support, education and training to health professionals caring for people with progressive neurological disorders. This service, staffed by senior clinicians of the Neurology Unit, Bethlehem Hospital, has a multidisciplinary approach. It's available to health professionals across Australia and aims to foster collaborative links across the community to promote and identify better health options for people living with progressive neurological disorders in metropolitan, rural and remote locations.	Research emphasis: The Motor Neuron Disease (MND) Database is a clinical research study designed to establish a comprehensive registry and analysis of the patterns of motor dysfunction in MND patients and rates of progression using the Appel rating scale. Other research interests within the Hospital include the study of cognitive impairment in the Department of Neuropsychology. Research into dysphagia by the Speech Pathology Department is another research interest of the Hospital. Contact person: Dr. Susan Mathers Phone: 61-3-9595-3355 Fax: 61-3-9596-3576 Email: SMathers@bethlehem.org.au
Sydney - University of Sydney MND Research Clinic Neurology Ambulatory Care Royal Prince Alfred Hospital Missenden Road Camperdown NSW Australia Phone: 02-9515-7839 Fax: 02-9351-3429 E-mail: rogerp@med.usyd.edu.au Website: http://www.pathology.usyd.edu.au/ Neuropath.html#Pamphlett Medical Director: Dr. Roger Pamphlett Specialty: Neurology, Neuropathology	Research emphasis: Our group is investigating the possibility that susceptibility genes underlie the predisposition to motor neuron disease. Contact person: Dr. Roger Pamphlett Phone: 02-9351-3318 Fax: 02-9531-3429 Email: rogerp@med.usyd.edu.au Record last reviewed: 23 Dec 2002
Sydney - Royal North Shore Hospital Multi-disciplinary Motor Neurone Disease Clinic Reserve Road St Leonards, NSW 2065 Australia Phone: 61-2-9926-8365 Fax: 61-2-9906-7719 E-mail: serjavec@doh.health.nsw.gov.au Medical Director: Dr. Dominic Rowe, Neurologist Specialty: Neurology Other specialities: Nurse Clinic coordinator, Respiratory Physician, Dietitian, Speech Pathologist, Physiotherapist, Occupational Therapist, Social Worker, Respiratory Clinical Nurse Consultant (CNC), Rehabilitation Consultant, Gastroenterologist, Orthotics Other information: Multi-disciplinary Motor Neurone Disease Clinic (MMNDC) at Royal North Shore Hospital was established in 1999 as the first multi-disciplinary MND Clinic in Australia. The clinic provides a multi-disciplinary team of health professionals who specialise in the care of patients with motor neurone disease. The initial assessment is completed in two days by the entire MND team. Following the two-day assessment, patients are followed every three months in the Outpatients Clinic where the entire MND Team assesses them. Recommendations are made regarding treatment options such as early institution of non-invasive ventilation, percutaneous endoscopic gastrostomy (PEG) and the need for assistive devices. Advice and information is also provided for health and community health professionals and people affected by MND.	Research emphasis: Quality of life Intra - Parotid Botulinum Toxin A injections in the treatment of sialorrhoea in Motor Neurone Disease Clinical trials: A Prospective study of Quality of Life in Motor Neurone Disease in Australia: The purpose of this study is to examine the relationship between quality of life (QoL) and deteriorating physical function in Motor Neurone Disease (MND) patients as well as the impact on their carers. Contact person: Sandra Erjavec, Clinic Coordinator Phone: 61-2-9926-8365 Fax: 61-2-9906-7719 Email: serjavec@doh.health.nsw.gov.au Record last reviewed: 02 Oct 2003
Sydney - Prince of Wales Hospital Multidisciplinary Motor Neurone Disease Clinic Institute of Neurological Sciences Prince of Wales Hospital High Street Randwick, NSW 2031 Australia Phone: 61-2-9382 2413 Fax: 61-2-9382 2437 Medical Director: Dr. Matthew Kiernan Specialty: Neurology Other specialities: Nurse Co-ordinator Respiratory Physician Gastroenterologist Rehabilitation Specialist Palliative Specialist Physiotherapist Occupational Therapist Social Worker Dietician Orthotist Other information: The Multidisciplinary Motor Neurone Disease Service is now running at Prince of Wales Hospital to service MND patients in South Eastern Sydney. This service runs monthly clinics at Prince of Wales Hospital for patients diagnosed with probable or definite MND. The clinic is staffed by a core team including: Neurologist , Respiratory Physician , a rotating Rehabilitation Registrar, Physiotherapist, Occupational therapist, Social worker, Speech pathologist and MND Nurse Co-ordinator. Referrals to the Prince of Wales Hospital MND service can be directed to the MND Co-ordinator who assesses patients in their homes, identifies their needs and books them into the monthly MND Clinic. The multidisciplinary MND team work closely with community health teams, offering advice on the ongoing management of those affected by MND. Patients are linked to the already existing community services through the clinic.	Clinical trials: Riluzole was first introduced to Australia at Prince of Wales Hospital through the 'Riluzole Early Access Program' which was an Open label, uncontrolled single treatment trial of Riluzole 50mg BD in the treatment of MND. Safety data was collected, looking specifically at patient monitoring and the development of adverse events while taking riluzole. The clinical service is attached to a research group at the Prince of Wales Medical Research Institute. Previous studies by this group have explored the mechanisms involved in the development of cramp, muscle twitching and weakness in motor neurone disease patients and found evidence that a novel type of sodium conductance in the nerves of MND patients is over-expressed relative to healthy control subjects. Collaborative studies are being undertaken with the MND service at Royal North Shore Hospital, investigating mechanisms of breathing difficulties experienced by MND patients particularly at night. In addition assessment of upper motor neurone function is being explored using transcranial magnetic stimulation and new cerebral and spinal imaging techniques. The Prince of Wales service is linked to the MND special interest group within the Australian Association of Neurologists and Dr. Kiernan is one of the NSW representatives (with Dr Dominic Rowe) of the steering committee involved in the development and commencement of the Australian Motor Neurone Disease Registry. Contact person: Margie Zoing (MND Co-ordinator) Phone: 61-2-9382 2413 Fax: 61-2-9382 2437 Email: ZoingM@sesahs.nsw.gov.au Record last reviewed: 28 May 2004
Sydney - Molecular Medicine Laboratory & ANZAC Research Institute Molecular Medicine Laboratory & ANZAC Research Institute Concord Hospital Hospital Road Concord, NSW 2139 Australia Phone: 61-2-9767-6202 Fax: 61-2-9767-6194 E-mail: molmed@med.usyd.edu.au Website: http://www.anzac.edu.au/neuro_index.html Director: Professor Garth Nicholson Other information: Supported by the Australian MND Research Institute and the ALS Association of the USA The Institute also has a neurogenetics clinic and familial MND clinic	Research emphasis: Familial ALS Finding new genes Gene loci Clinical trials: Contact person: Professor Garth Nicholson Phone: 61-2-9767-6202 Fax: 61-2-9767-6194 Email: molmed@med.usyd.edu.au Record last reviewed: 25 May 2004
Brisbane - Royal Brisbane & Women's Hospital Department of Neurology Royal Brisbane & Women's Hospital Phone: 07-36367096 Fax: 07-36367675 E-mail: Nicole_Hutchinson@health.qld.gov.au Web page address: http://www.health.qld.gov.au/rbwh /services/KO/neurology.asp Medical Directors: Dr. Robert Henderson and Dr. Pam McCombe Specialty: Neurology Other medical specialists: MND Nurse Co-ordinator, Palliative Care Consultant Physician and Nurse Co-ordinator, Respiratory Consultant Physician Other information: Monthly multidisciplinary MND clinic; involvement in the Australian MND Registry	Research emphasis: Motor unit number estimate using Bayesian methodology Contact person: Nicole Hutchinson Phone: 07-36367096 Fax: 07-36367675 Email: Nicole_Hutchinson@health.qld.gov.au Record last reviewed: 13 Jul 2004