Research Participation Opportunities

OPEN
 

Measurement of skill and strength in swallowing

The University of Canterbury's Rose Centre for Stroke Recovery and Research are looking for people in Christchurch or Auckland who are 50 years and older and who have myotonic dystrophy (type 1 or 2), oculopharyngeal muscular dystrophy, or inclusion body myositis, and have difficulty swallowing.

This study will measure patterns of swallowing impairment within people who have trouble swallowing because of neurological or muscle diseases. Improved diagnosis and understanding of swallowing problems will allow us to develop more effective treatments. The study consists of a clinical swallowing evaluation, and measurement of muscle activity and muscle force during swallowing and jaw-opening tasks. We are currently recruiting in Christchurch and Auckland. Please email Karen Ng karen.ng@pg.canterbury.ac.nz or call 03 364 2307 if you would like more information or are interested in participating.

Clinical trial in Duchenne muscular dystrophy 2015

A clinical trial of Zoledronic acid (Aclasta) in children and adolescents with Duchenne muscular dystrophy is currently underway at Starship Children's Hospital. This is a randomised trial of a bisphosphonate medication designed to answer the question of whether taking bisphosphonates improves bone health in boys and adolescents with Duchenne muscular dystrophy. If you'd like more information or you are interested in your child taking part please contact Miriam Rodrigues

MD-PREV STUDY 2015

AUT University together with the Muscular Dystrophy Association of New Zealand, and the New Zealand Neuromuscular Disease Registry, are conducting research into genetic muscle disorders in New Zealand.

Please click here to find out more information..

MD-Prev -logo

 

RESULTS
 

Improving care for people with Duchenne muscular dystrophy in New Zealand -The Care-NMD Survey
 

Care-NMD.PNG

Thank you to the forty-four percent of families with Duchenne muscular dystrophy who participated in this survey. Click here to see the preliminary results.  

WAITING FOR FINDINGS

Steroid Use in Duchenne Muscular Dystrophy

The Muscular Dystrophy Association (MDA) is a support organisation for people with neuromuscular conditions, including Duchenne muscular dystrophy (DMD). 

Currently one of the treatments for people with DMD is steroids. The standard steroid prescribed is prednisone which is subsidised and provided as part of New Zealand's health service. An alternative steroid deflazacort is not currently funded and individuals who want to use this steroid are arranging their own supply of deflazacort from overseas and pay for this themselves. 

The MDA are trying to understand how many people with DMD are using deflazacort as an alternative to prednisone and the reasons for this. This information will assist the MDA to make a submission to PHARMAC with the aim of having deflazacort recognised and funded as an alternative steroid treatment for DMD. 

 OTHER

The 2014 Survey of Healthcare Utilization and Costs of Duchenne muscular dystrophy in New Zealand. (The University of Western Australia's School of Population Science and the Harry Perkins Institute of Medical Research-lucinda.teoh@uwa.edu.au)

To investigate the perceptions that caregivers of chronically ill children have of their community pharmacist, and the support provided by them (2014 Fourth year pharmacy students from the University of Auckland - Dr Nataly Martin, Research Supervisor, Telephone: 09 373 7599 ext. 82150)