MDTRP Neuromuscular Research Biobank

Study Overview
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Brief Summary
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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.

Detailed Description
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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.

Official Title
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Muscular Dystrophy Translational Research Program Neuromuscular Research Biobank

Conditions
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Neuromuscular Diseases, Neuromuscular Disorder, Neuromuscular Diseases in Children

Participation Criteria
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Eligibility Criteria
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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

Ages Eligible for Study
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Maximum Age: 75 Years

Sexes Eligible for Study
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All

Accepts Healthy Volunteers
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Accepts Healthy Volunteers

Study Plan
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How is the study designed?
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What is the study measuring?
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Primary Outcome Measures

| Outcome Measure | Measure Description | Time Frame |
| --- | --- | --- |
| 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 Outcome Measures

| Outcome Measure | Measure Description | Time Frame |
| --- | --- | --- |
| To collect medical history information from subjects with all types of neuromuscular disease and healthy controls. | 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. | Baseline | 

 Terms related to the study
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Keywords Provided by Centre Hospitalier Valida
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Neuromuscular, Research Repository, Biobank, Neuromuscular Disorder