The Australian Motor Neurone Disease Registry (AMNDR) is a clinical database that provides a means to facilitate the collection and analysis of MND patient data such as demographics, site of onset, diagnosis data, treatment type, changes in functional capacity, complications related to disease progression and the impact of new treatments and interventions for MND. The goals of the registry are to improve patient care through continuous evaluation of patient management and associated outcomes and to form significant scientific research collaborations with organisations and individuals to further the understanding of MND.
Participating in the registry provides an opportunity for people living with MND to actively contribute to research. There are no extra tests, procedures or treatments involved. People living with MND 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 received in any way. All data collected is completely confidential and the neurologist will be the only person that ever knows the identity of the individual.
Most people who wish to be involved in AMNDR are registered by neurologists associated with the MND multidisciplinary clinics and centres in Victoria, New South Wales, Queensland, Western Australia and South Australia which are all registered with AMNDR as clinical sites. Registrations can, however, be made by individual neurologists who will first need to contact Assoc. Professor Paul Talman the President of AMNDR on firstname.lastname@example.org to receive the relevant forms, information and login details. The neurologist will also need to seek ethics approval from the hospital that he or she is affiliated with. They can then register with AMNDR as a clinical site and register their patients with MND who would like to contribute to AMNDR. Following registration the neurologist will need to complete online questionnaires with the person with MND at follow-up visits. Each person is allocated a unique ID number on registration and all information gathered is de-identified.
Some neurologists do not see many patients with MND and may not wish to register as a clinical site. If this is the case and you would like to be involved with AMNDR then you may like to get a referral to see a neurologist at the MND Clinic or centre in your state.
If you are not registered with AMNDR and would like to contribute to this valuable research please talk to your neurologist. If you have registered but have since moved and been referred to another neurologist please make sure he or she knows that you are registered so that they can continue to provide updates on your condition to AMNDR.
AMNDR Upate 2012 - presentation at the National MND Conference