This page contains useful links and downloads for clinical professionals.
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Coronavirus (COVID-19)
Information on coronavirus and risks it poses is changing rapidly. We strongly advise visiting the following website for real-time updates and advice, in particular when considering travel restrictions: www.nhsinform.scot.illness-and-conditions/infections-and-poisoning/coronavirus-covid-19
Downloadable resources
MND Register
- CARE MND Register-invite-letter-Patient Information Sheet-V1.0 [Dec 2021; MS Word]
- CARE MND Registration and Consent Form V1.0 [Dec 2021; MS Word]
Tissue banking / post mortem donation
- Scottish Regenerative Neurology Tissue Bank Participant Information Sheet v2.0 [May 2020; MS Word]
- Scottish Regenerative Neurology Tissue Bank Consent Form V2.1 [June 2020; MS Word]
- Post Mortem Brain and Spinal Cord Donation: MND Participant Information Leaflet (Version 2, 16th July 2021) [PDF, 739KB]
- MND Generic Pre-mortem Consent for Brain Donation (with capacity) Version 2, 16th July 2021 [PDF, 725KB]
About MND
Clinical guidelines
- MND Scotland: A Problem Solving Approach for General Practitioners & Allied Health Professionals (3rd edition, 2019)
- MND Advanced Clinical Nurse Specialist Pillars of Practice Competencies – Band 7 (v1.0 Nov 2019) [PDF, 330KB]
- Position Statement regarding Edaravone June 2018 (Scottish MND Steering Committee) [MS Word 20KB]
- NICE guideline: Motor Neurone Disease Assessment & Management [Feb 2016; PDF 190KB]
- National Clinical Guideline Centre: Motor neurone disease: assessment and management [Full guideline; Feb 2016; PDF 3.9MB]
- National Clinical Guideline Centre: Motor neurone disease: assessment and management [Appendices; Feb2016; PDF 5.6MB]
- BMJ Best Practice: Amyotrophic Lateral Sclerosis
- Managing dysphagia in MND MND Association. This information sheet provides suggestions, medication options and practical tips for health and social care professionals working with people with MND with swallowing problems [last revised March 2022]
- Cognitive change, frontotemporal dementia and MND MND Association. This booklet contains information on cognitive and behavioural change and dementia, and practical tips on management [last revised March 2022]
International MND meetings
ENCALS (European Network to Cure ALS) – annually in May/June
MND Association International Symposium on ALS/MND – annually in December
The Gordon Aikman Award
An award to improve the lives of people affected by motor neuron disease. Deadline in January.
This is an annual award to facilitate initiatives to improve the lives of people affected by MND. It is available to clinical researchers and healthcare workers in NHS Scotland or Scottish HEIs, for projects directly relevant to the care or management of people with MND.
See more information on the University of Edinburgh Centre for Clinical Brain Sciences website: The Gordon Aikman Award
Useful links
- MND Scotland
- Motor Neurone Disease Association
- Royal College of Nursing: support in your care for people living with motor neurone disease
- Anticipatory Care Planning Toolkit (Health Improvement Scotland)
- Euan MacDonald Centre for MND Research
- Speak:Unique -The Voicebank Research Project website
- Treatment Trials information on the MND Association website
- Clinical trials & treatments information from the MND Association International Symposium 2017