There are many ways to stay up to date with the latest research related to neuromuscular conditions from around the world. Here are some good places to start:
The FSHD Global Research Foundation focuses on finding treatments and a cure for FSHD. The Foundation undertakes a wide range of medical research focused on slowing the disease, muscle wellness and muscle technology. The aim of this research is not only to find a cure for FSHD, but to find ways that all people suffering from muscle weakness caused by neuromuscular disorders, muscle trauma and ageing will benefit. The FSHD Global Research Foundation website has information about medical research, including how to take part in clinical trials, updates on grants and publications, and introductions to their team of scientists.
The Friedreich Ataxia Research Association (fara) raises money to support research into treatments and a cure for Friedreich Ataxia. fara research priorities are to advance gene and stem cell therapy and improve outcomes for people with Friedreich Ataxia.
The American Muscular Dystrophy Association’s website provides excellent information about science and research, including grants, reports, a clinical trials finder and many other resources. You can also find information about each neuromuscular condition, including an outline of research details for that particular condition.
The Progress in Research page on Muscular Dystrophy UK’s website provides the latest research news, including information about current research projects.
Treat NMD is a global network promoting clinical research and best practice care for neuromuscular conditions. You can find standards of care for neuromuscular conditions as well as information about conditions and clinical trials.
Our mission is to advance medical research on rare diseases by providing support for clinical studies and facilitating collaboration, study enrollment and data sharing. Through the RDCRN rare diseases research groups (consortia), researchers and their teams work together with patient organizations (patient advocacy groups) to study nearly 200 rare diseases at clinical centers across the nation and worldwide.
The National Health and Medical Research Council (NHMRC) provides the following information about clinical trials on their website:
“Clinical trials are research investigations in which people volunteer to test new treatments, interventions or tests as a means to prevent, detect, treat or manage various diseases or medical conditions. Some investigations look at how people respond to a new intervention and what side effects might occur. This helps to determine if a new intervention works, if it is safe, and if it is better than the interventions that are already available.”
It goes on to state that “Clinical trials might also compare existing interventions, test new ways to use or combine existing interventions or observe how people respond to other factors that might affect their health (such as dietary changes).
Clinical trial interventions include but are not restricted to:
- experimental drugs
- cells and other biological products
- medical devices
- surgical and other medical treatments and procedures
- psychotherapeutic and behavioural therapies
- health service changes
- preventive care strategies and
- educational interventions.
Researchers may also conduct clinical trials to evaluate diagnostic or screening tests and new ways to detect and treat disease.”
In Australia, you can search the website of the Australian New Zealand Clinical Trials Registry (ANZCTR) for details of clinical trials being undertaken in Australia, New Zealand and elsewhere.
Some other sites that you can use to search for clinical trials include:
This page on the Muscular Dystrophy Association’s (US) website provides information about what is a clinical trial, frequently asked questions, types of clinical trials, how to find a clinical trial and preparing to participate in a clinical trial.
ClinicalTrials.gov is a database provided by the United States National Library of Medicine of privately and publicly funded clinical studies conducted around the world.
This American website provides information for parents about their child participating in a clinical trial. Topics covered include the importance of clinical trials, participation considerations, getting started and resources for children and parents.