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Chapter 7: Research & Clinical Trials

Resource Overview

This chapter is here to help you make sense of what’s happening in the world of neuromuscular research and clinical trials. Here you’ll discover what clinical trials involve and how to access trustworthy information for your child.

In this chapter, you will find:

A snapshot of current research and how treatments are evolving
Clinical trials explained – phases, benefits, risks and considerations
Guidance on how to find relevant trials for your child
Registries 101 – what they are, why they matter and how to participate
Tips on talking with your child’s neuromuscular specialist about research

Read at your own pace and use this chapter as a guide to feel confident, informed and connected.

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Managing Transitions: The Road Ahead

An overview of the types of transitions your child may experience in the coming years, with guidance to help you navigate them confidently.

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You, Your Child & Your Family

Advice from other families, support for carers, and guidance on talking to your child, siblings and wider family and friends.

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Download the Full Resource Guide

Prefer to have everything in one place? You can download the complete New Diagnosis Companion Resource Guide as a single, easy-to-read PDF.

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A monthly virtual catch up for mothers in our community to share stories and connect in a casual environment.

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Mums’ Chat

A monthly virtual catch up for mothers in our community to share stories and connect in a casual environment.

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Email: info@mdnsw.org.au

Phone: (02) 9888 5711

Freecall: 1800 635 109

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Muscular Dystrophy NSW
ABN 11 774 587 436

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Phone: (02) 9888 5711

Freecall: 1800 635 109

Email: info@mdnsw.org.au

Postal Address: PO Box 3071, North Strathfield NSW 2137

Muscular Dystrophy NSW would like to acknowledge the Traditional Custodians of the land on which we live and work, and we pay our respects to their Elders past and present. We extend that respect to all Aboriginal and Torres Strait Islander peoples.

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