Australasian Multiple Sclerosis Network of Care Multiple Sclerosis Network of Care Australia

A Voice for People Affected by MS


 
Multiple Sclerosis HoriZonsSCAN Road Map

CCSVI Australia

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  Innovation  & CCSVI
  Life Quality & CCSVI
  Adapting to Change
  A Right to be Tested
  The Early Adopters
  Patients Perspective
  Treatment & Contacts
 
Support Services
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  Exercise
  Home Care
  Income Support
  Rehabilitation
  Transport/Mobility
Networking
 
Australia
  Demographics
  Networking 
  Network of Care 
  CCSVI Australia 
 
NSW
 Demographics
 Networking
 
ACT
 Demographics
 Networking
 
Victoria
 Demographics
 Networking
 
Queensland
  Demographics 
 Networking
 
South Australia
 Demographics
 Networking
 
West Australia 
 Demographics
 Networking
 
 Tasmania
 Demographics
 Networking
 
Early Days
  Horizon Group
  Discussion Archive
  Pathways Project 
  Video Archive

  

What is Multiple Sclerosis? News Headlines Major Topic Index Quick Reference Guide
       
CREDIBILITY, COVERAGE AND CAPABILITY
Originating in Australia in 2003 the Road Map is a collaborative approach to knowledge sharing. The Road Map is underpinned by the Network's HoriZonsSCAN research methodology - whereby, at least once every 24 hours, several thousand global MS reference sites are screened via leading edge search engine and database technology to construct the HoriZonsSCAN database. Special regard is placed on minimising duplication of content.
Two of Australia's peak health advisory bodies, the National Health and Medical Research Council and HealthPACT have acknowledged it's importance as a source of information for individuals living with MS and their families. The respected International Society for Neurovascular Disease (ISNVD) identifies HoriZonsSCAN's research reporting capability as "amazing''.
THE HoriZonsSCAN PROCESS - A UNIQUE RESOURCE
What makes HoriZonsSCAN different is that all of the parameters by which information is analysed, prioritised and displayed are patient-centred - reflecting ongoing feedback over many years. It is proving to be a unique resource for families living with MS, service providers, researchers, policy advisors and parliamentary representatives irrespective of locality. In order to preserve the historical integrity of this process details of Australian experiences are frequently highlighted. While around 30% of current references relate to Australian experience they invariably typify issues of broad relevance.
Not all topics are necessarily MS specific but most have relevance to approaches to enhancing Quality of Life perceptions when living with MS. In circumstances where services are not generally available, or fall below the expectations, it aims to provide an overview of what may be needed. Not all aspects apply universally as needs vary according to disability level and personal circumstances. The Major Topic Index exemplifies the broad scope of  HoriZonsSCAN's subject matter.
DISPLAYING SEARCH RESULTS
HoriZonsSCAN  currently accesses more than 1,000 titles that underpin 10,000 (minimum) context specific (user defined)  abstracts. When displaying search results HoriZonsSCAN is defaulted to broadly prioritise these abstracts as follows: 
  Default - To display all HorizonsSCAN  titles and associated default abstracts - click here. Underpinning algorithms prioritise responses as follows:
     Priority 1 - Evidence based, subject matter narratives (including "fact sheets") relating to topical issues - example
       Priority 2 - Patient Centred Feedback - includes information from newsletters, support group web sites and testimonials - example
       Priority 3 - Global "evidence based" research relating to priority 1 and 2 subject matter - example
  User Specified - Whereby context sensitive abstracts are ''fine tuned'' and titles prioritised according to individual users information needs - click here
  Putting it all together - some examples:         Nutrition              Exercise             Sleep              CCSVI            Social Media           Pain Management         NDIS
 
ADVANCED RESEARCH

 
Advanced Research involves queries using Boolean Operators. In general terms this happens automatically when constructing queries using the advanced research Query Form. It involves including the words AND, NOT or OR (all in caps) between the words of queries. To set the order of searching parentheses are placed around the words to be sought, i.e (fatigue AND heat) OR temperature. To restrict queries to a specific year add (example) AND 2013. To locate references to a specific locality or person just enter the name, i.e Toowoomba or Zamboni - it's that easy.
 
If HoriZonsScan does not respond as you feel it should try including a wildcard * with your query, i.e pneum* rather than, or in addition to, pneumoniae. Sometimes it may also help to check the bookmarks directory for “pre-packaged” frequent queries. To keep it simple, start with a single word, ie fatigue and modify as needed, ie fatigue AND heat NOT exercise. To display abstracts for all HoriZonsScan references click here (not necessarily in priority order). The Major Topic Index (following) is also an excellent starting point.
STATISTICAL TRENDS
HoriZonsSCAN data can also be an indicator of statistical trends in Multiple Sclerosis understandings. For example since 2011, and by reference to the prevalence of published research, it identifies a ''shift in emphasis'' from approaches to suppressing the immune system to a neurovascular approach that also identifies cardiovascular irregularities as significant contributors to MS progression.  Abstract comparisons, as at 29 May 2016 follow:
Preliminary Scan * Records Registered Cardiovascular and/or Immunotherapy Immunotherapy Only  Other
11,000 1,160 778 135 285
  Abstracts Abstracts Abstracts Abstracts
Eliminates Duplications, Restricted Sites  and incompatible file formats
 
    INFORMATION IN THE ROAD MAP IS BROADLY STRUCTURED AS FOLLOWS:
 
 
 

A

A Process of Continual Improvement
A Voice for People Affected by MS
About Multiple Sclerosis
About this Road Map
Abnormal Sensory Symptoms

Absence of Australian Standards

Access Problems Accelerate Disability Progression
Access to Rehabilitation

Action Strategy CCSVI - Draft National Strategy - Australia

ACT Demographics & Support
Adapting to Change - CCSVI

Advanced Research Option
Advocacy Issues
Aerobic Exercise

Agency Thinking  - Hope
Air Conditioning

Alemtuzumab (Lemtrada)
Alzheimer's - Blood flow associations

Ampyra Fampyra - Overview
Ampyra Fampyra - MS Drug Warning

An Age of Discovery
Angioplasty and CCSVI

Antibiotics
Antibiotics - Minocycline
Aquatic Exercise - Hydrotherapy
Arteries and Veins - impact of restricted blood flows
Atherosclerosis

Ataxia and Tremor

Aubagio (teriflunomide)

Auditing MS Service Delivery

Australia's National Disability Strategy
Australian MS Societies 
Australian MS Longitudinal Study
Australian MS Support Environment

Autoimmune Disease
Autonomic Dysfunction
Autonomic Nervous System, MS and CCSVI
Auto-immune Diseases
Avonex

Award Winners - MS Advocacy

 

B

Bacterial Associations with MS
Balance Problems
Benchmarks for Service Delivery
Beta Interferon's

Beyond Clinical Trials
Bioten (Vitamin B7) Benefits

Bipartisan Approach

Blood-Brain barrier

Bladder Issues

Blood Brain Barrier - Neuroprotection - What is this?
Blood flow from the Brain (CCSVI)  - A cause of MS?
Blood Flow slower in pwMS

Bloodflow - Pulse Wave Irregularities

Blood Platelets - MS Connection

Blood Tests and MS

Bookmarks - Popular Queries

Botox and MS
Bowel Dysfunction
Bowen Therapy

Brain Associations - All references
Brain Gym
Brain Bank - MS Research

Brain Microbleeds

Brain Plasticity and MS
Brave Dreams Clinical Trial
Bridging Information Gaps

 

C

Cannabis and MS
Carelink Service
Carbon Dioxide impact
Cardiorespiratory Exercise

Cardiovascular Issues
Care Needs of people with MS
Care Plans prepared by GP's

Care Standards
Carer Allowances and related payments

Carer Assistance and Respite Support
Carer and Family Support - MS Australia
Carer Respite and Counselling Services
Carer FlexiRest 
Carer Support Groups
Carer Transport Concessions

Carers Stress buffering importance of Hope
Case Management

Case Study - Patient Centred Care
Catheter Venography - What is it?I

CCSVI Draft National Strategy - Australia
CCSVI - Quick Reference Guide

CCSVI Reference Group - Vascular Issues
CCSVI Treatment Benefits
Centrelink Services
Cerebral endothelial cells
Cerebral Venous Return - Measuring
Change - adapting to - CCSVI
Charter of Individual Rights
Chegs - Exercise Groups

Chiropractic.& External Vein Compression
Chlamydia pneumoniaecm (CPN) and MS
Cladribine - an oral immunotherapy drug 
Clinical Perspective to MS

Clinical Trials - overview

Clinical Trials - beyond such trials

Cochrane Cross References
Cognitive Changes
Colostrum
Common Issues
Community Transport
Community Nurses
Companion Card for Carers
Complementary Therapies
Complex Symptoms
Computers at reduced cost
Concentration Issues

Conflicts Between CCSVI Research Outcomes
Conflicts of Interest

Consumer Directed Care  - CDC
Continence Issues

Continual Improvement in MS care
Copaxone
Coordination Issues
Coping
Counselling Support - Carers

 

D
Deep Vein Thrombosis/CCSVI association

Demographics
Depression, Anxiety and Mood

Diabetes and MS

Diabetes and MS - Discussion Forum.
Diagnosis
Diagnosis - Misdiagnosis Issues
Dietary Factors

Diffusion of Innovation

DisabilityCare Australia - NDIS

Disability Insurance - NDIS National Scheme
Disability Progression - Accelerated by Access Problems

Disability Progression Trends
Disability Support Pension
Disablility Parking

Disability Rights

DNA and Genetic Factors

Dysautonomia, CCSVI and MS - Dr Michael Arata

Disease Modifying Therapies - Overview/Feedback
Disclaimer
Discussion Forums
Dispelling the Myths about CCSVI

Donations
Doppler Ultrasound Ultrasound - CCSVI

Drug Therapies

 

E
Early Adopters - Role of
Economic Impact of MS
Education/Support for Service Providers

Emotional Issues
Employment Support

Empowerment via Stress-Buffering  - Hope
Enable NSW - Appliances for Disabled People
Enar/Scenar and Pain Management

Endothelial Cells - Role of
Energy/Electricity Rebates
Evaluating MS Service Delivery
Erik Erikson - Quality of Life

Epstein-Barr Virus
Establishing Evaluation Benchmarks
Exercise and Physical Therapies


F
Facial Reflexology

Falling Through the Cracks - Risks of
Family Support

Fampyra - Overview
Fampyra - MS Drug Warning

Fast Tracking Support - Examples
Feldenkrais and Body Movement
Fascial Kinetics - Bowen
Fatigue
Feedback - your ideas are important
Fibrinogen - an MS Trigger?
Financial Planning

Fingolimod (Gilenya )

First Do No Harm
FlexiRest Carer Support

Food and Nutrition
Frustration

Funding Guidelines for MS Research
Future Directions

 

G

Genetic Factors

Geographic Isolation Factors
Gilenya (fingolimod)
Global Tuning Points - CCSVI

Glucose Deficiences and MS Progression
Gluten Sensitivy and Neurological Disorders

Glymphatic System
Glyconutrients

Goal Setting - Empowerment via Stress-Buffering
GP Care Plans

Gray and White Matter MS Lesions

Guidelines for Funding MS Research
Guidelines for Health Professionals

 

H
Handy Bar transfer aid
Handy Hints - researching this Road Map

HDLS - A genetic brain disorder and MS

Healthy Eating
HealthPACT and CCSVI

Heart Disease and MS
Holistic Approach to Service Provision
Home Care and Support
Home Modifications

Hope - A Powerful Element in the MS Equation

Hopes and Satisfactions

HoriZonsSCAN Search Engine

Horizon Group - early days
Horse Riding

Human Rights and MS
Hydrotherapy

Hypoperfusion of brain parenchyma
Hypoxia and Fatigue


I
Imaging Technologies

Immunotherapy Medications - Side Effects -

Immunotherapies - Overview
Impaired Thermoregulation
Income Support

Independent Living Centres

Inflammation and MS
Information and Video resources
Information needs of MS Communities
Innovation  & CCSVI

Insurance - NDIS National Disability Scheme

Interferon beta
Internet Access - concessional rates (TAD)

Interventions Empowerment via Stress-Buffering

Investment Planning
Iron Deposition and MS

Isolation Factors
Issues and Symptoms
IVUS - Locating Venous Obstructions

 

J - K
Jugular Dysautonomia

L

Leadership Australia

Leadership Benchmarks

Lemtrada (Alemtuzumab)

Lesions - Pathology of MS Lesions
Life Quality & CCSVI
Lifetime Continuous Care
Lifestyle Issues
Lipoic Acid Benefits
Living with your Emotions
Living with MS
Longitudinal Study - AMSLS Australia
Lyme Disease and MS

Lymphatic System Revisited

 

M
Maintenance of the Road Map
Marijuana and MS
Massage Therapy

Medications

Medications Side Effects - Immunotherapy
Medications and Quality of Life - Questionable Associations

Medications Neuroprotection - What is this?

Medicare Local  - role of

Medicines Australia - regulatory role

Meditation and MS
Meetings - Regional

MEM-net CCSVI Diagnostic & Research Database
Memory Management

Meta-Analyses - Role of

Microbleeds in braini
Minocycline - an Antibiotic

Misdiagnosis Issues

Misinformation
Mobility allowance
Mobility Aids/Scooters/Wheelchairs
Modifications at Home
Modifications at Work
Modified Passenger Vehicles
Mood changes
Motor Vehicles -  Wheelchair access
MRI past, present and future
Multi Disciplinary Service Delivery

Multiplier Effect on Isolation Factors
Multiple Sclerosis Society of NSW

MS Advisory Council

Multiple Sclerosis Limited  - MS Ltd
MS Australia - State Organisations
MS Australia - Support Services
MS Overview
MS Research Australia

MS Research Funding Guidelines

MStranslate
Muscle Stiffness
Myelin Repair

 

N

Natalizumab Tysabri
National Disability Insurance - NDIS
National Public Toilet Map
Naturopathy

Needs, Issues and Expectations
Network of Care

Networking Opportunities

Neurplasticity and MS

Neuroprotection - What is this?

Neurovascular links with MS
Newly Diagnosed - support services
News Headlines

New Zealand Support Networks

NDIS National Disability Insurance Scheme
NHMRC Guidelines - Care of pwMS
NHMRC and CCSVI

Northern Rivers MS Support Group

Northern Territory Demographics & Support

NSW Demographics & Support

Numbness
Nursing Standards for MS Care

Nutrition

 

O

Ocrelizumab (Ocrevus) 

Open Letter
Outreach Workers - MS Australia
Oxygen Deprivation impact

 

P
PADP - Appliances for Disabled People (Enable)
Pain Management
Parking - Disabled

Parliamentary Perspectives

Partnering in MS care
Parkinsons Disease - CCSVI Association

Pathways Thinking  - Hope
Pathways Project

Patient-Centred Care - Overview

Patient Centred Care - Case Study
Patients Perspective - CCSVI
Peak Body Perspective
Peer Support Program
Percutaneous Venoplasty (PTA)
Perfusion - Bloodflow
Petition - Add your Support

Physical Activity and Exercise
Pins and needles

Plasticity and MS
Platelets and MS
Plethysmography and CCSVI

Political Perspective to MS and CCSVI

Popular Topics  - Bookmarks

Population movements - MS Prevalence

Pregnancy and MS
Prevalence of MS
Prevalence of CCSVI conditions
Progression of MS over time

Productivity Commission Report - 2011

Productivity Commission -  Disability Strategy

Protecting the Vulnerable

Psychological Factors
PTA - Angioplasty and CCSVI

Pulse Wave Bloodflow Irregularities

 

Q
QI Gong and healing
Quality of Life - the Erikson Model
Quality of Life - Living with MS
Quality of Life - Measuring QoL Perceptions

Quality of Life and Medications - Questionable Associations

Queensland Demographics & Support

 

R
Rebif
Red Tickets - Transport Subsidy
Reflexology
Reiki

Reference Group - Vascular Issues
Referral Pathways

Regional MS Clinics - need for

Regional MS Prevalence and Disability levels

Regional/Rural Isolation Factors

Regional Solutions to Regional Issues
Regional Support

Registering with the MS Network of Care


Rehabilitation Expectations and Issues

Research Funding Guidelines

Residential Care Financial Issues
Respite Care

Retirement Planning
Richmond Community Options

Right to be Tested - CCSVI
Rights of those with Disabilities
Risks Placebos and Mythbusting

Road Testing MS Referral Pathways

S
Sailability
Saffin, Janelle, MP (advocacy)

Satisfaction Levels - Access to Services
Scenar and Pain Management
Screening for vein irregularities

Service Provision Guidelines

Service Provision Satisfaction Levels
Sexual Dysfunction

Side Effects - Immunotherapy Medications
Site Map
Sleep Dysfunction
Social Media - impact of
Social Networking

South Australian Demographics & Support
Spasticity
Speech Problems
Sport, Exercise and Physical Activity
Standards of Care
Standards Provide Certainty about MS Care

Stem Cell Research
Stents and related devices
Strategic Direction
    CCSVI HealthPACT Review - Nov 2011
    CCSVI -
A Political Perspective - 2011

    Consumer Directed Care
    Economic Impact of MS - 2010 study

    NHMRC Guidelines -  Care of pwMS
    National Disability Insurance Scheme - NDIS
    Pathways Project - a Regional Perspective
Strength and Cardiorespiratory Exercise
Stress

Stress-Buffering  - Hope
St Vincent's Hospital - Lismore, early days
Sunshine and MS - including Vitamin D

Superannuation/Investment Planning

Support for Activities of Daily Living
Support Groups

Swank Low Fat Diet
Symptoms and Issues
Symptom Management - video link

 

T

Tai Chi and MS
Talking Points

Tasmanian Demographics & Support
Taxi - Concessions
Technical Aids for the Disabled (TAD)

Testimonials

Tecfidera

Telecommunications - concessional rates

Telemedicine and MS
Temperature Intolerance

Teriflunomide (Aubagio)

Training Resources for MS Education
Transport and Mobility
Transport Needs of MS communities
Transport Subsidy - Red Tickets
Transport Survey 2009
Treatment

Treatment Benefits - CCSVI
Treatment Delayed is Treatment Lost - CCSVI
Treatment & Contacts - CCSVI

Trends in Disability Progression
Trials - Clinical
Tysabri natalizumab

 

U

United Nations Conventions and MS
Ultrasound - Doppler

United Statement - CCSVI & MS Australia

 

V
Vascular Irregularities and MS
Veins and Arteries - impact of restricted blood flows
Venograms - CCSVI
Venoplasty and CCSVI
Venous Obstructions - IVUS
Vibration Therapy/Exercise

Victorian Demographics & Support
Video and Information Resources
Visual Problems
Vitamin D Links to MS

Vulnerable People - Protection of

 

W
Weak Legs
Western Australia Demographics & Support
What is MS
What's happening to me? - invisible MS
Wheel Chair accessible vehicles - including hiring

White and Gray Matter MS Lesions
World Health Organisation - WHOQOL-100

 

X, Y, Z

Young People in Nursing Homes
Young People - supported living


     
MAINTENANCE OF THE ROAD MAP AND DISCLAIMER

The Road Map to Multiple Sclerosis Support Services is maintained on a voluntary basis by Peter Sullivan (a person with MS) on behalf of the Multiple Sclerosis Network of Care Australia (the Network) and the broader MS Community. While every effort is made to ensure the accuracy and validity of this information, you should always consult your doctor or other health care professional involved in your ongoing health care needs. The vast majority of topics and associated reference points have been highlighted by members of the MS community and/or Peak Agencies.

 Not all topics are necessarily MS specific but most have relevance to approaches to enhancing Quality of Life perceptions when living with MS. In circumstances where services are not generally available, or fall below the expectations, it aims to provide an overview of what may be needed. Not all aspects apply universally as needs vary according to disability level and personal circumstances.

The site includes information derived from various third parties which is neither endorsed nor supported by Peter or the Network and does not necessarily reflect any of the Network's aims and objectives. Neither Peter nor the Network takes no responsibility for the accuracy, currency, reliability and correctness of any information included in information provided by third parties nor for the accuracy, currency, reliability and correctness of links or references to external information sources (including Internet Sites).

Links to other sites and information sources are provided for information only. Care has been taken in providing these links as suitable reference resources. However, due to the changing nature of such sites and sources, it is the responsibility of the users to make their own investigations, decisions, enquiries about the information retrieved from such sites and sources. Providing these links does not imply any endorsement, non-endorsement, support or commercial gain.

To the extent that, for more than a decade, the Road Map was hosted on the web site of NSW Health see also the
Terms and Conditions (
disclaimer) relating to this site,

 

 

Facts Sheet RM1679MS

Road Map Reference

 


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