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Current and Planned Publications

All these publications are within the scope of the Information Standard.

  • Titles in bold have been through our full Information Standard approved Publication system.
  • All publications are reviewed annually to ensure any contact details and links are correct.
  • A full review is conducted once every three years.

You can find all these on our website (either by clicking on each publication below, or by clicking here) or you can order hard copies here.

Title Publication/Last Full Review Last Annual Review/Interim Update Full Review Due
Spinal Muscular Atrophy - Key Information

Sept 2017

Mar 2018

(Version 3.5)

Sept 2020

The Genetics of Spinal Muscular Atrophy 
 

Feb 2018

 

June 2018

(Version 2.1)

Feb 2021

The Genetics of Some Rarer Forms of Spinal Muscular Atrophy

Feb 2018

(Version 2)

 

Feb 2021

Route Map for Spinal Muscular Atrophy Type 1

Dec 2015 Dec 2016 Dec 2018

What is Spinal Muscular Atrophy Type 1?

April 2017

May 2018

(Version 1.7)

April 2020

Looking After Your Baby with SMA Type 1

April 2017

June 2018

(Version 4.5)

April 2020

Nusinersen for children with SMA Type 1: Information for Families

Aug 2017

June 2018

(Version 1.5)

Aug 2020

Route Map for Spinal Muscular Atrophy Type 2

June 2015 June 2017 June 2018

Spinal Muscular Atrophy Type 2 Information Sheet

Feb 2018

May 2018

(Version 3.3)

Feb 2021
SMA Type 2 and Me

March 2016

March 2017

(Version 1)

March 2019

Route Map for Spinal Muscular Atrophy Type 3

Sept 2015 Sept 2016 Sept 2018

Spinal Muscular Atrophy Type 3 Information Sheet

Jan 2018

 

June 2018

(Version 3.2)

Jan 2021

SMA Type 3 and Me

April 2017

(Version 2)

  April 2020

Toys, Play and Activities for Babies with Spinal Muscular Atrophy

April 2015

April 2017

(Version 2.2)

April 2018

Toys, Play and Activities for Children with Spinal Muscular Atrophy

April 2015

April 2017

(Version 1.2)

April 2018

Leisure Activities for Children and Young People With SMA

July 2015

May 2017

(Version 2.1)

May 2018

Toys and Play for Babies and Children with Spinal Muscular Atrophy - A Guide for Professionals

July 2015

Sept 2017

(Version 1.2)

Sept 2018
Wish Granting Charities

Feb 2018

(Version 2)

 

Feb 2021

Route Map for Spinal Muscular Atrophy with Respiratory Distress (SMARD)

March 2017

  March 2020

SMARD Information Sheet

 

Feb 2018

(Version 4.1)

May 2020
Route Map for Adult
Onset SMA

Aug 2016

  Aug 2019

Spinal Muscular Atrophy Type 4 Information Sheet

June 2016

June 2018  

(Version 2.6)

June 2019

Who's Who of Professionals

March 2017

(Version 4)

 

March 2020

Glossary of Terms

Mar 2016

Jan 2018

(Version 3.2)
Jan 2019
Future Options in Pregnancy
Aug 2015
 

Sept 2017

(Version 2.1)

Sept 2018

Protection for the Future - 
A Guide to Trusts and Wills

Feb 2018

(Version 2)

 

Feb 2021
Facing Bereavement Dec 2017   Dec 2020

Support if you are Bereaved

Dec 2017

(Version 3)

 

Dec 2020

 

Title Information Standard scope
SMA Matters Newsletter Only health and social care information
Website The above publications

 

Outside the scope of the Information Standard:

Title Publication/Last Full Review Last Annual Review Full Review Due
Families Experiences of Bereavement August 2016 Dec 2017 August 2019
Smasheroo and Tilly Smile Books for children. You can find out more about these books by clicking here.

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