Northwestern Neuromuscular Disease Biobank
Official title: Northwestern Neuromuscular Disease Biorepository
Run by Northwestern University · NCT07477509 · Data updated 2026-11-12
This project will collect blood, skin, spinal fluid, and clinical information from adults with neuromuscular diseases seen at Northwestern to create a shared resource for research.
Quick facts
| Study type | Observational |
|---|---|
| Ages | 18 Years and up |
| Sex | All |
| Enrollment | 2500 (estimated) |
| Sponsor | Northwestern University Academic / other |
| Locations | 1 site (Chicago, Illinois) |
| Status | Recruiting |
| Started | May 1, 2026 |
| Main results expected | March 2050 |
| Study ends | March 2050 |
| Registry record updated | May 26, 2026 |
| Trial ID | NCT07477509 on ClinicalTrials.gov |
Is this trial a fit for you?
✓Likely a good fit
Adults undergoing evaluation for or diagnosed with a neuromuscular disorder who are under the care of a Northwestern Neuromuscular Division provider and can provide informed consent.
✕Probably not a fit
Patients who cannot provide required samples—such as those with bleeding disorders or on anticoagulants that preclude CSF or skin biopsy—or who are not treated at Northwestern are unlikely to directly benefit from participation.
A plain-English reading of the study's rules. Only the study team can confirm whether you qualify.
What this trial studies
Northwestern will enroll a large cohort of adults with a range of neuromuscular disorders and obtain longitudinal clinical data alongside biosamples including whole blood, plasma, serum, PBMCs, skin biopsies, and cerebrospinal fluid. Participants are identified by chart review and consented in the Northwestern Neuromuscular clinic, with samples stored in a centralized biorepository. De-identified clinical data and samples will be made available to partnered investigators to accelerate basic and translational research. The program aims to link carefully phenotyped longitudinal data to biosamples to speed discovery of disease mechanisms and potential therapies.
Why it matters
Potential benefit: If successful, the biobank could speed discovery of better diagnostics and treatments by providing well-characterized patient samples to researchers.
How similar studies have gone: Biorepositories and disease-specific sample banks have previously helped accelerate discoveries in neuromuscular disorders, so this approach builds on established, successful models.
Who can join: the full rules
Show full inclusion / exclusion criteria
Inclusion Criteria: * 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. Exclusion Criteria: * History of a bleeding disorder or current treatment with anticoagulants (e.g., Coumadin, heparin) in participating study participants that would preclude collection of CSF or skin biopsies for these sub-studies. * History of keloid formation for study participants who will undergo skin biopsy.
Where it's running
-
Northwestern University Department of Neurology
Chicago, Illinois, United States Recruiting
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How to take part
- Review the eligibility criteria above with your treating physician.
- Check the official listing on ClinicalTrials.gov for the latest contact details and recruitment status.
- Contact the study coordinator or principal investigator to ask for pre-screening. Pre-screening is free and never obligates you to enroll.