Research update
The role of gene UBQLN2
Researchers from Northwestern University Feinburg School of Medicine in America have identified that faulty ubiquilin 2 plays an integral role in motor neurone disease. Led by eminent researcher Prof Teepu Siddique this research group describes unique mistakes in a gene called UBQLN2, which codes for a protein called ubiquilin 2, in five families with the inherited form of ALS. They also discovered that ubiquilin is found in both the inherited and sporadic form of MND. This discovery could be a key to finding a new treatment for the disease. This research was published in the prestigious journal Nature.
Research Newsletter
The latest MND Australia International Research Update edited and presented in easily accessible language by Dr Justin Yerbury is now available - click here. This report looks at some newly discovered MND genes, including UNBQLN2, and what this means for understanding MND. The report also looks at some of the other MND research going on all around the world.
Clinical trial recruitment for Dexpramipexole now ended
The relatively small population base of people living with MND in Australia has been an almost impenetrable barrier to Australian participation in international clinical trials.
However a Phase 3 Study of in ALS/MND is now being conducted and includes a few major MND centres in Australia. This is the first time that an international phase three clinical trial has included Australian sites. The trial will be spread over 61 sites worldwide and consequently only a relatively small number of people have been recruited to the trial in Australia.
It marks a very significant and positive step forward for ALS/MND research in this country and is a testamony to the work of Australian clinicians in collaborating and engaging with their international peers. Follow this link for more information on these clinical trials.
Focus on the role of palliative care in managing MND
Improving end of life care in neurological disease - a framework for implementation
This recent publication by the UK National End of Life Care Programme (NHS) outlines challenges and approaches for palliative care involvement in neurological disease. These guidelines, produced in association with the National Council for Palliative Care and the Neurological Alliance (UK), confirm many aspects of the philosophy underpinning the MNDcare approach including:
- the complex nature of neurological disease involving a wide range of symptoms and unpredictable rates of progression
- the need for holistic coordinated multidisciplinary care
- the need to establish effective communication with the patient and to listen to the person’s perception of their individual needs
- assessing people with neurological disease can be time consuming, however, early assessment and effective communication are important for establishing trust and avoiding misunderstandings
Working together to improve quality of life for people with MND – MND Associations and Palliative Care
Presentations at Conferences
National Palliative Care Conference, Cairns, August 30–September 2
Three MND project and research reports were presented at the recent Diversity 2011 conference:
- Carol Birks, Executive Director, MND Australia, spoke about the MNDcare website - Living Better for Longer: Facilitating a coordinated multi/interdisciplinary approach to MND care through 'one stop shop' online resource
- Gina Svolos, Manager of Family Support Services, MND NSW spoke about MND Aware: A web based awareness training program about motor neurone disease
- Professsor Samar Aoun, WA Centre for Cancer and Palliative Care, Curtin University, presented a research report - An educational program for service providers to guide palliative care for people with MND
International Symposium ALS/MND, Sydney November 28–December 2
Several papers focussing on palliative care issues will be presented at the Allied Professionals Forum. In addition a number of palliative care papers will be presented during the International Symposium. These include:
Morning Clinical Stream - November 30
- Dr Frank Brennan, Calvary Hospital NSW will give a keynote address on The role of palliative care in the management of MND
Afternoon Clinical Stream - December 1
- Dr David Oliver, Consultant in Palliative Care at the Wisdom Hospice, Rochester, UK, an internationally renowned speaker and author in motor neurone disease and palliative care, will speak about The effectiveness of palliative care in the later stages of ALS/MND
- Dr Orla Hardiman, Clincal Professor of Neurology, University of Dublin will talk about Defining principles and standards of palliative care in ALS
MND Associations and palliative care teams around Australia collaborate closely in the management of MND clients and their families. An increasing evidence base and evolving guidelines indicate that early involvement of palliative care for consultation and review constitutes best practice in the management of people with MND. However, for a variety of reasons, access to palliative care remains inconsistent nationally.
Offering an expanding pool of evidence based MND information and education resources, MND Australia looks forward to continued close collaboration with Palliative Care Australia.
