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 and learn more about the disease. To participate people living with MND should visit their neurologist as usual and ask to be registered. The neurologist will need to fill out an initial case report form detailing treatment and health at the time of the visit. 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. Each person registered is assigned a patient ID number which will be used for the case report forms. Case report forms are then faxed to an independent clinical research organisation where the data is pooled.
For more finromation about the Australian Motor Neurone Disease Registry visit http://www.amndr.org
