Northwestern Neuromuscular Disease Biorepository
The primary objective of this research is to collect clinical data and tissue samples from adult patients with neuromuscular disease cared for at the Northwestern Memorial Hospital neuromuscular clinic (Lavin Building, 19th floor). This study has the following aims: Aim 1: To consent a large cohort of adult study participants with neuromuscular disorders, including but not limited to motor neuron diseases, neuropathies, neuromuscular junction disorders, and myopathies for participation in the biorepository and to collect longitudinal data on their clinical disease phenotypes. Aim 2: To obtain and store biological samples from biorepository study participants, including whole blood, plasma, serum, peripheral blood mononuclear cells \[PBMCs\], skin biopsies, and cerebrospinal fluid. Aim 3: To develop a data-sharing process to provide de-identified biorepository participant clinical data and samples to partnered investigators to expedite discovery in neuromuscular disease diagnosis and treatment.
• Undergoing evaluation for or diagnosed with a neuromuscular disorder, including but not restricted to motor neuron diseases (MNDs), neuropathies, neuromuscular junction disorders, and myopathies as a patient under the care of a provider in the Northwestern Neuromuscular Division
• Provision of signed and dated informed consent form personally or via legally authorized representative (LAR) \[SOP: HRP-013\] in accordance with Good Clinical Practice (GCP), International Conference on Harmonization (ICH), and local regulations.