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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
What is Spinal Muscular Atrophy?

Sept 2018

(Version 1.1)

Dec 2018

Sept 2021

Symptoms, Diagnosis & Effects of 5q SMA

Sept 2018

(Version 1)

  Sept 2021

The Genetics of 5q SMA
 

Sept 2018

(Version 1)

 

Sept 2021

The Inheritance Patterns of Some Rarer Forms of SMA

Sept 2018

(Version 1)

 

Sept 2021

Route Map for Spinal Muscular Atrophy Type 1

Dec 2015 Dec 2018 Jan - Mar 2019

Looking After Your Child Who Has SMA Type 1

Sept 2018

(Version 1)

 

Sept 2021

Nusinersen for children with SMA Type 1: Information for Families

Aug 2017

Sept 2018

(Version 1.7)

Aug 2020

How Clinical Trials Work

Sept 2018

(Version 1)

  Sept 2021

Route Map for Spinal Muscular Atrophy Type 2

June 2015 Dec 2018 Jan-Mar 2019

Looking After Your Child Who Has SMA Type 2

Sept 2018

(Version 1)

 

Sept 2021
SMA Type 2 and Me

March 2016

March 2017

(Version 1)

March 2019

Route Map for Spinal Muscular Atrophy Type 3

Sept 2015 Dec 2018

Jan-Mar 2019

Looking After Your Child Who Has SMA Type 3

Sept 2018

(Version 1)

 

Sept 2021

SMA Type 3 and Me

April 2017

(Version 2)

  April 2020

Toys, Play & Activities for Babies and Young Children who have SMA

Aug 2018

(Version 1)

 

July 2021

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

Oct 2018

(Version 2)

Oct 2021
Wish Granting Charities

Feb 2015

Feb 2018

(Version 2)

Feb 2021

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

March 2017

Dec 2018 Jan-Mar 2019

Rarer Forms:

  • DSMA-V
  • SBMA
  • SMA-LED
  • SMA-PME
  • SMARD1
  • X-Linked SMA

Sept 2018

(Version 1)

 

Sept 2021
Route Map for Adult
Onset SMA

Aug 2016

Dec 2018 Jan-Mar 2019

Looking After Yourself If You Have Adult Onset SMA

Sept 2018

(Version 1)

 

Sept 2021

Who's Who of Professionals

March 2017

(Version 4)

 

March 2020

Future Options in Pregnancy for Couples affected by 5q SMA
Aug 2015
 

Dec 2018

(Version 3)

Dec 2021

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.