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Northwestern Neuromuscular Disease Biorepository

This study is creating a collection of information and samples from adults with neuromuscular diseases (NMDs), such as motor neuron diseases, neuropathies, and myopathies, who are cared for at Northwestern Memorial Hospital. The goal is to gather clinical details and biological samples like blood, plasma, and skin biopsies. This collection will help researchers better understand these conditions and develop new treatments. There are no specific interventions or drugs being tested in this study; it's focused on gathering information for future research. Success for this study means collecting these biospecimen samples over a long period, up to 50 years.

Study design
This is an observational study aiming to enroll 2500 participants. It is not testing a specific drug or treatment.
What's involved
Not specified in the trial record.
Compensation
Not stated in the trial record.
Follow-up
Biospecimen samples will be measured for up to 50 years.

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NCT07477509

Northwestern Neuromuscular Disease Biorepository

Recruiting
Not specifiedAges 18+Observational
Northwestern University
~2,500 participants
Updated 2026-05-26 on ClinicalTrials.gov

At a glance

Recruiting sites
1 of 1 listed site is recruiting right now
RecruitingSuspended, closed, or not yet open
What they're measuring
Biospecimen Samples
Measured over 50 years

Conditions

Neuromuscular Diseases (NMD)

Explore related trials

Neuromuscular Disorder

Where it's being run

1 sites across 1 states
Illinois1

Who to contact

Ryan Donaghy, MD
[email protected]
312-503-3936
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Eligibility criteria

Inclusion

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

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.

What this trial measures

  • Biospecimen Samples50 years

    This is a longitudinal registry of biofluid samples paired to categorized clinical data ultimately used to provide sample to partnered basic scientists and accelerate discovery in neuromuscular medicine.