NCT01784679

Who might be able to join this trial:

• You must be willing and able to give electronic consent for your medical information to be shared with the study organizers.
• You must have been diagnosed with one of the following conditions: GNEM, HIBM, Quadriceps Sparing Myopathy (QSM), Inclusion Body Myopathy Type 2, distal myopathy with rimmed vacuoles (DMRV), or Nonaka disease.
• You must be willing and able to follow all of the study's procedures and requirements.
• You must be willing to have your information included in the GNEM Disease Registry (a database tracking this condition).
• You must be able to provide genetic test results confirming GNE disease — note that genetic testing will not be done as part of this study, so you would need to provide existing results from your doctor or another source.
• In the opinion of the study doctor, you are likely to attend scheduled visits and follow study procedures.

Who may not be able to join:

• For the in-person part of the study (Natural History Component): if you have another illness or condition that the study doctor believes would interfere with your participation or affect your safety, you may not be eligible (confirm with trial site).
• For the online registry part of the study: there are no reasons that would prevent you from joining this portion.

Important: Always verify eligibility with the trial site directly before applying.