Other useful information

DMD Patient Registry

The DMD Registry is a UK and Ireland-based patient registry that collects information about patients who are affected with both Duchenne and Becker muscular dystrophy, and also female carriers. The information collected in the UK registry is fed into the TREAT-NMD global registry for DMD. Registration is voluntary and done by the patients/parents themselves. To register online, visit the website or contact the registry at the address below.

Why should I register?

  • Registered patients may be able to participate in clinical trials more easily
  • Registered patients are kept informed about the results of current research into new treatments for DMD
  • Registries may help raise urgently needed funding for research

W: www.dmdregistry.org
A: DMD Registry, Action Duchenne, Epicentre, 41 West Street, London, E11 4LJ

Educational and behavioural support

Decipha is a comprehensive learning and behaviour programme that can be used by schools, parents and education professionals. It offers training and a structured web based literacy intervention programme. Decipha gives an expert assessment of young people’s learning and behaviour needs. Visit the website for more details of the programme and how to become involved.

E: janet(at)decipha.org
W: www.decipha.org

Emergency care pack

Most people living with DMD will never need to visit an emergency department, however if your son becomes unwell and needs to go to hospital this pack contains vital information that you can pass onto the emergency doctors. Visit the Action Duchenne website to register for your free copy.

W: www.actionduchenne.org/aefile/

Immunisation schedules

UK: Information provided by the NHS on the current UK immunisation schedules.

W: www.nhs.uk/conditions/vaccinations/pages/vaccination-schedule-age-checklist.aspx

Ireland: Information provided by the HSE on the current Irish immunisation schedules.

W: www.immunisation.ie

BMI calculator

A tool provided by the NHS to calculate if the whole family is a healthy weight, providing practical tips and information for maintaining a healthy diet.

W: www.nhs.uk/tools/pages/healthyweightcalculator.aspx

Growth charts

Children aged 0-4 years: The early years UK growth charts have been produced by the Royal College of Paediatrics and Child Health, and endorsed by the World Health Organisation (WHO).

W: www.rcpch.ac.uk/Research/UK-WHO-Growth-Charts

Children aged 5-19 years: WHO have produced growth charts for children aged 5-19 years.

W: www.who.int/growthref/who2007_bmi_for_age/en/index.html

Wheelchair services

UK: A list of NHS wheelchairs services around the country, allowing easier contact with local services.

W: www.wheelchairmanagers.nhs.uk/services.html

Ireland: The Irish Wheelchair Association is a national charity established by a group of wheelchair users to provide quality services to people with limited mobility throughout the country.

W: www.iwa.ie


Provides information on a variety of issues specifically related to any UK government schemes, such as applying for a disabled facilities grant to adapt your house, and support for your child at school.

W: www.direct.gov.uk

Information based on consensus statement (published in January 2010)