Neuromuscular Diseases, Neuromuscular Diseases in Children, Neuromuscular Disorder
Conditions
Keywords
Neuromuscular, Research Repository, Biobank, Neuromuscular Disorder
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.
Detailed description
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.
Interventions
None listed
Sponsors
Virginia Commonwealth University
Study design
Observational model
OTHER
Time perspective
CROSS_SECTIONAL
Eligibility
Sex/Gender
ALL
Age
No minimum to 75 Years
Healthy volunteers
Yes
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
Design outcomes
Primary
| Measure | Time frame | Description |
|---|---|---|
| To collect, store, and share with other researchers any tissues that subjects with all types of neuromuscular disease are willing to donate. | 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
| Measure | Time frame | Description |
|---|---|---|
| To collect medical history information from subjects with all types of neuromuscular disease and healthy controls. | 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. |
Countries
United States
Contacts
CONTACTNicholas Johnson
PRINCIPAL_INVESTIGATORNicholas E. Johnson, MD
Virginia Commonwealth University
Outcome results
None listed