Recruiting

Observational Study

Sponsor:

Northwestern University

Code:

NCT07477509

Conditions

Neuromuscular Diseases (NMD)

Eligibility Criteria

Sex: All

Age: 18+

Healthy Volunteers: Not accepted

Study Details

Brief summary:

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.

Conditions

Neuromuscular Diseases (NMD)

Study ID

NCT07477509

Start date

May 1, 2026

Status verified date

May, 2026

Completion date

Mar, 2050

Anticipated

Primary completion date

Mar, 2050

Anticipated

Eligibility Criteria

Eligibility Criteria

Sex: All

Age: 18+

Healthy Volunteers: Not accepted

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.

Study Design

Enrollment

2500 participants

Anticipated

Interventions and Outcome Measures

Primary outcome measure

  • Biospecimen Samples [ Time Frame: 50 years ]

Central Contacts and Locations

Locations

Northwestern University Department of Neurology

Recruiting

Chicago, Illinois, United States, 60611

Contacts

Ryan Donaghy, MD

312-503-3936ryan.donaghy@nm.org

6108062029ryan.donaghy@nm.org

Principal Investigator:

Ryan Donaghy, MD

More Information

Sponsor

Northwestern University

Last update posted

May 26, 2026

Last verified

May, 2026

Trial information was received from ClinicalTrials.gov and was last updated on 2026-09-09. This information was provided to ClinicalTrials.gov by Northwestern University on 2026-05-26.