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.

NCT Number	NCT07477509
Lead Sponsor	Northwestern University
Conditions	Neuromuscular Diseases (NMD)
Enrollment	2,500 participants
Start Date	2026-05-01
Primary Completion	2050-03 (estimated)
Study Completion	2050-03 (estimated)
Updated on ClinicalTrials.gov	2026-05-26