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For further information, please visit our website or contact us at info@ann.org.au.

AHNA Newsletter | March 2015

MDA/ANN Conference 2015

The MDA/ANN Conference is quickly approaching - do not forget to register! Details of the conference can be found by visiting the MDA/ANN Conference Website.

A range of workshops will be included in the program that may be of particular interest to Allied Health and Nursing professionals including:

1.
Diet,  exercise & complementary therapies session
 
2. Respiratory workshop for therapists working with people with neuromuscular disorders
 
3. Workshop for commonly used clinical assessments in paediatric neuromuscular disorders

The conference will also provide an important opportunity for us to meet as a group, where Allied Health Professionals and Nurses will be invited to discuss our progress and determine areas for growth within our team (chaired by Dr Paula Bray).

Should you have any ideas for items to include in the agenda of the AHNA meeting, we would love to hear from you! Please contact our coordinator Mel Mandarakas with your suggestions.

 

We look forward to meeting with you in April!

 

1000 Norms Project Progress

The 1000 Norms Project has past the halfway mark! Over 600 people have volunteered to be included in the study.

To find out more, follow this link or watch this video where Professor Josh Burns explains the important meaning behind the project and how it can help patients with neuromuscular disorders.

DMD Guidelines Update

As you know, the AHNA group commenced the development of an allied health clinical practice guideline for Duchenne muscular dystrophy (DMD) at the end of last year. The guidelines are progressing well with the establishment of the scientific committee, we have had two teleconferences to date. We have a scope and questions drafted for our systematic review to commence at the end of March. We thank all those who have offered their support in these early stages. We are looking forward to engaging with the wider allied health community when we start the Delphi study to gain consensus about assessment and  management for boys with DMD.
 
We look forward to sharing future updates in the next newsletter
Zoe Davidson and Paula Bray. 

CMTPedS calculator now online!

The Centre of Research Excellence in Neuromuscular Disorders has just finalised a new calculation tool to measure the level of disability in children with Charcot-Marie-Tooth disease (CMT).

The CMTPedS Calculator is a user-friendly online tool developed to support the CMT Pediatric Scale, which collects validated measures of strength, dexterity, sensation, gait, balance, power and endurance to establish severity of disease and monitor changes over time in children with CMT. It can also be used to evaluate outcomes in studies of existing or new treatments for CMT.

Clinicians and researchers can enter patient data live into the CMTPedS Calculator to rapidly determine disease severity and generate a clinical report for patient correspondence and records. To start using the calculator, go to www.cmtpeds.org.

The CMTPedS site features links to the CMTPedS validation paper in Annals of Neurology, as well as training resources and videos of how to use the CMT Pediatric Scale and calculator. 

Copyright © 2015 Allied Health and Nursing Alliance, All rights reserved.

Our mailing address is:
Murdoch Childrens Research Institute
Level 5, The Royal Children’s Hospital
Flemington Road Parkville Victoria 3052 Australia

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