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Recruiting

NCT Number: NCT05434572

CIMR Neuromuscular Research Biobank

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.

Recruiting

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Key information

Conditions

Neuromuscular Diseases Nervous System Diseases Neuromuscular Diseases in Children Neuromuscular Disorder

Age range

Up to 75 year

Sex eligibility

All sexes

Study type

Observational

Primary location

Virginia Commonwealth University

Richmond, Virginia, 23298, United States

Location status: Recruiting

Location contact

Carino Jennings

CONTACT

[email protected]

804-828-1271

Nicholas E. Johnson, MD

PRINCIPAL_INVESTIGATOR

About this study

The study involves collection of medical information about research participants and their families. No identifying information about family members will be collected. Research participants will be asked for any general knowledge they have related to possible neurological disorders.

Research participants are also given the opportunity to provide blood, skin cells, urine, saliva, fecal matter, muscle tissue, cells, DNA and/or RNA samples.

Before any study procedures take place, the informed consent form will be provided and reviewed with potential research participants in detail. Potential research participants will have an opportunity to ask additional questions before starting any study procedures.

Who can participate

Healthy volunteers accepted: Yes

Only the study team can determine whether someone qualifies for participation.

Inclusion criteria

  • 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

Exclusion criteria

  • Unwilling to sign consent

Treatment and study plan

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.

    Time frame: Baseline

    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)

Secondary outcomes

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

    Time frame: Baseline

    Information will be collected from the subject medical records and will include care they have received in the past, are receiving now, or may receive in the future. Subject information may include name, age, gender, diagnosis, and other medical history information that may be beneficial to the research staff.

Study contacts

Contact information is provided by the study sponsor or research team.

Nicholas Johnson

CONTACT

[email protected]

804-628-1624

Sponsors and collaborators

Lead sponsor

Virginia Commonwealth University

Other

Registry information

Official study title

Center for Inherited Muscle Research Neuromuscular Research Biobank

Acronym: NRB-0001

Important dates

Study start
2021
Primary completion
2030
Study completion
2030
First posted
Jun 28, 2022
Registry last updated
Jul 6, 2026

OpenTrials presents study information sourced from ClinicalTrials.gov. The official registry record should be consulted for the latest information.

View the official ClinicalTrials.gov record (opens in a new tab)

This listing is for discovery and informational purposes only. It is not medical advice, does not guarantee that a study is recruiting, and does not determine eligibility. Contact the study team and a qualified healthcare professional when considering participation.

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