CIMR Neuromuscular Research Biobank
For patients and families
In plain language
An automatic summary of structured registry data. It is an orientation aid, not a substitute for the official protocol or a physician assessment.
- What is being studied
- This is an observational study: the protocol does not assign a study treatment.
- Who it may be relevant to
- Registry conditions: Neuromuscular Diseases, Neuromuscular Disorder, Neuromuscular Diseases in Children. Basic parameters: up to 75 years · All.
- What needs checking
- Age, condition and sex are only basic indicators. Prior treatment, laboratory values and other mandatory requirements appear in the eligibility criteria below.
- Where it takes place
- United States
- Next step
- Save the trial, show it to the treating physician, and confirm current recruitment with the study center. Costs, documents and travel →
Unsure about the terms? Read our patient guide →
Official title
Center for Inherited Muscle Research Neuromuscular Research Biobank
Overview
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.
Primary outcome measures
- 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]
Secondary outcome measures (1)
- To collect medical history information from subjects with all types of neuromuscular disease and healthy controls. [Time frame: Baseline]
Eligibility criteria
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
Criteria are shown verbatim from the registry (in English). Final eligibility is always assessed by the study center.
Healthy volunteers: Yes
Study design
- Observational model
- Other
Study locations
United States · 1 center
- Virginia Commonwealth University — Richmond
Identifiers
NCT: NCT05434572 · HM20021172