CIMR Neuromuscular Research Biobank

NCT05434572 | Recruiting

• 1 other identifier: HM20021172
• Study Type: observational
• Target: 500
• Locations: 1 country
• Sites: 1

Brief Summary

The purpose of this research repository is to collect, store, and share with other researchers any tissues that subjects with all types of neuromuscular disease are willing to donate. These samples will be stored at Virginia Commonwealth University (VCU) and will be used for future research with this population.

Conditions

Neuromuscular Diseases; Neuromuscular Disorder; Neuromuscular Diseases in Children

Keywords

Neuromuscular; Research Repository; Biobank; Neuromuscular Disorder

Outcome Measures

Primary Outcomes (1)

• To collect, store, and share with other researchers any tissues that subjects with all types of neuromuscular disease are willing to donate.

  Subjects will have the opportunity to provide the following samples: saliva or cheek swab, urine sample (up to 15ml), feces (up to 2mg of a stool sample), blood (up to 40ml), muscle biopsy tissue, and cell line (subjects have the option to allow a cell line to be made from their blood, muscle, or skin biopsies to provide a renewable supply of DNA and other cell components for research)

  Baseline

Secondary Outcomes (1)

• To collect medical history information from subjects with all types of neuromuscular disease and healthy controls.

  Baseline

Eligibility Criteria

• Age: Up to 75 Years
• Sex: all
• Healthy Volunteers: Yes
• Age Groups: Child (0-17), Adult (18-64), Older Adult (65+)
• Sampling Method: Non-Probability Sample

Study Population

This is a very inclusive study that will allow samples from known subjects of sites' neuromuscular clinics, associated family members, and healthy volunteers. This study will include subjects with any form of neuromuscular disorder, including neuromuscular disorders of unknown etiology.

You may qualify if:

• Willing and able to give informed consent
• Positive diagnosis or suspected diagnosis of neuromuscular disease, or
• Family history of neuromuscular disease, or
• Healthy volunteer
• Age Neonates-75

You may not qualify if:

• Unwilling to sign consent

Sponsors & Collaborators

• Virginia Commonwealth University: lead

Study Sites (1)

Virginia Commonwealth University

Richmond, Virginia, 23298, United States

RECRUITING

Biospecimen

Retention: SAMPLES WITH DNA

As part of this repository, subjects will also have the option to allow a cell line to be made from their blood, muscle, or skin biopsies to provide a renewable supply of DNA and other cell components for research. A cell line is a frozen sample of specially processed cells from blood that allows us to grow more cells and obtain more DNA and other cell components, such as RNA or proteins, for future research. The cell line would not be labeled with the subjects name, address, birthdate, or other personal identifiers.

MeSH Terms

Conditions

Neuromuscular Diseases

Condition Hierarchy (Ancestors)

Nervous System Diseases

Study Officials

• Nicholas E. Johnson, MD

  Virginia Commonwealth University

  PRINCIPAL INVESTIGATOR

Central Study Contacts

Nicholas Johnson

CONTACT

804-628-1624; nicholas.johnson@vcuhealth.org

Study Design

• Study Type: observational
• Observational Model: OTHER
• Time Perspective: CROSS SECTIONAL
• Target Duration: 1 Day
• Sponsor Type: OTHER
• Responsible Party: SPONSOR

Study Record Dates

• First Submitted: June 21, 2022
• First Posted: June 28, 2022
• Study Start: March 17, 2021
• Primary Completion (Estimated): January 1, 2030
• Study Completion (Estimated): February 1, 2030
• Last Updated: July 4, 2025

Record last verified: 2025-07

Locations

US (1)