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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.
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.
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| 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 |
| 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. |
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Inclusion Criteria:
Exclusion Criteria:
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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.
| Name | Role | Phone | Extension | |
|---|---|---|---|---|
| Nicholas Johnson | Contact | 804-628-1624 | nicholas.johnson@vcuhealth.org |
| Name | Affiliation | Role |
|---|---|---|
| Nicholas E. Johnson, MD | Virginia Commonwealth University | Principal Investigator |
| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| Virginia Commonwealth University | Recruiting | Richmond | Virginia | 23298 | United States |
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| ID | Term |
|---|---|
| D009468 | Neuromuscular Diseases |
| ID | Term |
|---|---|
| D009422 | Nervous System Diseases |
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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.
| Baseline |