July 2013

In This Issue

ANN Meeting: March 2014, Melbourne
The 1000Norms Project 
Biogenix- Towards a national database

Save the date

ANN Meeting
26-29th March 2014, Melbourne

Meeting Dates
26th March
Training day 
27th/28th March
CRE/ANN scientific meeting
29th March
Parent/patient day

For more information please visit the ANN website at:

The 1000 Norms Project has begun!

The 1000 Norms Project is a large-scale research project conducted at The University of Sydney.
The aim
The aim of the study is to collect outcome measures from 1000 healthy individuals across the lifespan. This will enable a large database of reference values for the healthy population to help determine what is ‘normal’. Once completed, this database will be freely available to clinicians and researchers internationally.
Recruitment of 1000 people aged 3-100 years old will be commencing shortly via advertising. For generalisability, sampling strategies will be employed to recruit individuals that will reflect the demographics of the general population.
Who can take part?
All individuals who consider themselves healthy for their age and can participate in normal daily activities, with respect to their age, can take part in the study.
What does it involve?

Participation in the study involves attending The University of Sydney for one assessment. The assessment includes a range of physical items and questionnaires to gather information regarding the; physical characteristics, physical function, balance, strength and power, flexibility and range of motion, endurance, biomechanics, sensation and motor planning of participants. Participants will also be invited to provide a saliva sample for DNA analysis.
Project commencement
Pilot testing for assessments included in the 1000 Norms Project will commence shortly in August. Following results of the pilot testing, the official advertising campaign and data collection for the project is expected to commence in October 2013.

Introducing: Biogenix- Towards a national database

Why do we need Biogenix?
To assess the effectiveness of preventative or treatment interventions and to establish best practice guidelines for rare diseases, it is essential to have access to epidemiological and natural history data. To centralise and build on this data, the ANN committed to the goal of developing a national integrated research database using the Biogenix system.
What does Biogenix do?
Biogenix will provide secure storage for information collected by researchers, clinicians and pathologists to describe the progression of rare diseases over time. It has the capabilities of holding patient data and may be used in muscle research and will link in with existing registries and platforms to be developed as part of RDConnect, RAREBestpractice and Neuromics programs. Data is stored in the most secure level of data storage we have in Australia, in a site holding banking and ASIO’s information!
The Plan
We are planning on rolling out Biogenix to three sites in Melbourne, Sydney and Perth to test its functionality. Members at these key sites have been experimenting with the database to learn about its function and decide what adaptations or changes they require to enable the system fulfill their needs. Based on their feedback, the Biogenix program is currently being modified to be an indispensable database allowing for enhanced collaborations and a deeper understanding of rare diseases. 
Copyright © 2013 Australasian Neuromuscular Network (ANN), All rights reserved.
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