Northwestern Neuromuscular Disease Biobank
Northwestern Neuromuscular Disease Biorepository
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 |
|---|---|
| Enrollment | 2500 (estimated) |
| Ages | 18 Years and up |
| Sex | All |
| Sponsor | Northwestern University Academic / other |
| Locations | 1 site (Chicago, Illinois) |
| Trial ID | NCT07477509 on ClinicalTrials.gov |
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.
Who should consider this trial
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.
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.
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 performed: Biorepositories and disease-specific sample banks have previously helped accelerate discoveries in neuromuscular disorders, so this approach builds on established, successful models.
Eligibility criteria
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 this trial is running
Chicago, Illinois
- Northwestern University Department of Neurology — Chicago, Illinois, United States (Recruiting)
How to participate
- Review the eligibility criteria above with your treating physician.
- Visit the official trial page on ClinicalTrials.gov for the most current contact information and recruitment status.
- Contact the listed study coordinator or principal investigator to request pre-screening. Pre-screening is free and never obligates you to enroll.