RESOURCES
Information and practical support for the MSA community
Finding clear and reliable information after an MSA diagnosis can be difficult.
National MSA Research is developing practical resources for people living with Multiple System Atrophy, families, carers, healthcare professionals and others who want to better understand the condition.
Our resources are designed to support conversations with healthcare professionals, help people organise important information and make useful information easier to find.
Patient and family resources
Living with MSA can involve many appointments, changing symptoms, new terminology and important decisions.
Our patient and family resources are being developed to help make some of that information easier to navigate.
Resources may include information about:
- understanding MSA
- preparing for medical appointments
- organising healthcare information
- symptoms and symptom management
- members of the healthcare team
- support for family members and carers
- planning ahead
- Australian support services
- research and registries
- living well with MSA
National MSA Research Patient Support Guide
Our Patient Support Guide brings together practical information that people and families can refer to throughout their MSA journey.
The guide has been designed as a practical resource that can be kept, printed and referred to as needs change.
It includes information and worksheets covering areas such as understanding MSA, healthcare appointments, symptom information, emergency details, carers, support services, planning ahead and useful records.
NMR Member Document Centre
Selected National MSA Research guides, information sheets, checklists and practical resources are available through our secure Member Document Centre.
Member access helps us protect the resources developed by National MSA Research, ensure people receive the most current version of each document and keep important updates connected with the people using those resources.
The Document Centre will allow members to access resources appropriate to them, including patient and family information, carer resources, professional materials and other National MSA Research publications.
This helps us:
- understand which resources are most useful to the MSA community
- send the correct and most current version of a resource
- notify people when an important resource they requested has been updated, where they have chosen to receive those updates
Access to the Document Centre requires sign-in.
Practical tools and checklists
Alongside our information resources, we are developing practical tools that may help people organise information and prepare for appointments.
These may include:
- appointment preparation sheets
- medication records
- healthcare team contact lists
- symptom notes and trackers
- emergency information sheets
- questions to discuss with healthcare professionals
- carer information
- planning and important-contact checklists
New tools will be added as they are developed and reviewed.
For family members and carers
MSA can affect the whole family.
Family members, friends and carers may take on practical, emotional and advocacy roles as a person’s needs change.
Our resources will include information designed specifically for people supporting someone living with MSA, including practical organisation, preparing for appointments, finding support and looking after their own wellbeing.
Australian support and services
There are many services that may form part of a person’s support network, depending on their individual needs and circumstances.
Our resources will help people find information about relevant Australian health, disability, carer and community services.
Because services and eligibility can change, we will aim to keep these resources reviewed and updated over time.
Research information
Research can be complex, particularly when people encounter unfamiliar terminology, study advertisements or information about clinical research.
National MSA Research wants to help make research information easier to understand and connect the community with appropriate opportunities as they become available.
Resources for healthcare professionals
We also want to develop resources that can support healthcare professionals who encounter people living with MSA.
As this area grows, we may provide professional information, awareness resources, downloadable materials and links to relevant clinical and research information.
Can’t find what you need?
Our resource library will continue to grow.
If you are looking for information that is not currently available, let us know. Feedback from people living with MSA, families, carers and professionals can help us understand where additional resources may be useful.
Important medical information
nformation provided by National MSA Research is general information only and is not a substitute for individual medical advice, diagnosis or treatment.
Always discuss symptoms, medications and health concerns with qualified healthcare professionals.
In an emergency in Australia, call 000.