GNE Myopathy

Clinical Research/Studies

Are there clinical trials or research for GNE myopathy?

As of March 2016, there are several clinical trials looking at possible treatments for GNE myopathy (inclusion body myopathy 2 or IBM2). A complete list of current studies can be found by visiting https://clinicaltrials.gov and searching for inclusion body myopathy 2.

In March of 2016 there were at least two ongoing natural history studies. A natural history study allows scientists to track what types of symptoms people with IBM2 are experiencing to get a more complete picture of the disorder. GnemDMP Disease Monitoring Program (https://www.gnem-dmp.com) is a program established to help understand how Inclusion Body Myopathy Type 2 affects people and help researchers better understand the condition to help find potential treatments. There is a patient part - an online registry, and a physician part - a Natural History Study. The link for the Natural History Study is: https://clinicaltrials.gov/ct2/show/NCT01784679?term=ux001&rank=3

Another Natural History Study is being conducted by the National Human Genome Research Institute (NHGRI), in collaboration with Therapeutics for Rare and Neglected Diseases (TRND). Information can be found at https://clinicaltrials.gov/ct2/show/NCT01417533

Antidote also offers a handy tool to find clinical trials.

References
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How can I donate money to GNE Myopathy?

How can I donate money to GNE Myopathy?

You can contact groups for patients that support research into a cure for GNE myopathy (inclusion body myopathy 2 (IBM2)) and ask how to donate money to further research:

Neuromuscular Disease Foundation

Muscular Dystrophy Association (MDA)

The Myositis Association

  • Phone: 800-821-7356 (toll-free) or 703-299-4850
  • Email: tma@myositis.org
  • Website: www.myositis.org

Muscular Dystrophy UK

Advancement of Research for Myopathies (ARM)

TREAT-NMD Neuromuscular Network

Sephardic Health Organization for Referral and Education (SHORE)

Patients Association for Distal Myopathies (PADM)

References

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