GNE Myopathy (GNEM, HIBM, QSM, DMRV, Nonaka Myopathy or IBM type 2) is a rare, adult-onset, progressive muscle disease with many unanswered questions. More information is needed to better understand how this disease affects people and progresses over time.
- The GNEM Disease Monitoring Program (GNEM-DMP) is a way to understand how GNEM affects you and others to help guide researchers so that potential treatments can be developed as fast as possible.
- There are two ways to get involved in the GNEM-DMP: the patient-reported part, or online registry; and the physician-reported part, or natural history study.
- Even if you are participating in another registry, natural history study or clinical trial, you can still participate in the GNEM-DMP.