Northwestern Neuromuscular Disease Biorepository
ConditionNeuromuscular Diseases (NMD)
Trial statusRecruiting
Trial phaseNot listed
Trial typeObservational
Biological sexAll
Age18+
SponsorNorthwestern University
About this trial
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.
Eligibility criteria
This trial does not accept healthy volunteersQualifiers
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.
Disqualifiers
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.
Trial population
Neuromuscular Diseases
Trial design
Design model
Other
Time perspective
Other
Treatments tested in this trial
Not listed
Trial groups
No trial groups listed
Trial outcomes
Primary outcomes
1
Biospecimen Samples
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.
Time frame
50 yearsSponsors and contacts
Click on the lead sponsor to view all of their trials.
Source ClinicalTrials.gov