AMNDR is an ambitious project to register and collect data from every person diagnosed with MND in Australia. The Registry will contain de-identified data from people diagnosed with MND.
AMNDR collects information on MND diagnosis, treatment, management and outcomes from all over Australia.
AMNDR will provide information about the disease; it's progression and how doctors manage it. This will enable doctors to compare treatment strategies and to establish 'Best Practice' guidelines for patient care.
The registry provides people living with MND with an opportunity to actively contribute to research and learn more about the disease. The neurologist will fill out a case report form detailing the treatment and health situation at the time of the visit. There are no extra tests, procedures or treatments involved. People are free to decline or to withdraw from the study at any time.
Contacts for Victoria: Austin Health (03) 9496 5000 and Bethlehem Hospital (Calvary Healthcare) (03) 9596 2853
AMNDR Patient Information
What is AMNDR?
The Australian Motor Neurone Disease Registry (AMNDR) has been established to collect information on people diagnosed with motor neurone disease (MND). The registry has been designed by a steering committee of neurologists from around Australia.
AMNDR has been developed to collect information on MND diagnosis, treatment, management and outcomes from all over Australia. Because there are no imposed
interventions, AMNDR will be collecting information on what's happening in 'real life'.
Who will benefit from AMNDR?
AMNDR will provide information about the disease; its progression and how doctors manage it. This will enable doctors to compare treatment strategies and to establish 'Best Practice' guidelines for patient care.
Why would I want to participate in AMNDR?
This registry will provide you with an opportunity to actively contribute to research and learning more about the disease. You will have the same high level of care that you have always had, and be making a difference to people in the future.
What happens if I participate?
You visit your neurologist as usual; the neurologist will fill out a case report form detailing your treatment and your health at the time of your visit.
There are no extra tests, procedures or treatments involved.
You are free to decline or to withdraw from the study at any time. Choosing not to participate will not affect the quality of care and support you receive in any way.
Who will see the information collected on me? Will my data be kept confidential?
Your neurologist will be the only person that ever knows 'who you are'. To keep your data completely anonymous, you will be assigned a patient ID number. Your patient ID number will be the only reference to you on case report forms. Case report forms are then faxed to an independent clinical research organization where your data will be pooled with everyone else'. At no time will they know who you are.
How often do I have to attend?
Start: Initial visit, registration in AMNDR
Visit 1: 3 months from last visit
Visit 2: 3 months from last visit
Visit 3 onwards: every 6 months
I would like to participate. What should I do?
Tell your neurologist at your next visit or contact MND Australia Inc ph. 02 9816 5322