Tissue donations could unlock secrets of muscle diseases
NCT ID NCT05434572
First seen Jul 06, 2026 · Last updated Jul 07, 2026 · Updated 1 time
Summary
This study creates a biobank to collect and store tissue samples—such as blood, muscle, saliva, urine, and stool—from people with neuromuscular diseases, their family members, and healthy volunteers. The samples will be shared with researchers to help them better understand these conditions and potentially develop new treatments. Participation involves donating samples and allowing access to medical records, but no experimental therapy is given.
What this could mean
Our plain-language read of the trial. This is informational only, not medical advice or a prediction.
- What this could lead to
- If this biobank succeeds, it could provide researchers with the samples they need to better understand neuromuscular diseases and develop new treatments.
- What could go wrong
- This is a biobank, not a treatment trial. It does not test any therapy, so there is no direct benefit to participants. The research it enables may take years or may not lead to any specific findings.
This is an AI summary of the original study and may miss details. Read our disclaimer.
Study facts
What this study's own registry entry says, in plain language.
- Participants
-
About 500 people
The number the study aims to enrol. It can still change while the study runs.
- Started
-
Mar 2021
- Expected to finish
-
Feb 2030
An estimate. End dates often move.
- Lead sponsor
-
Other sponsor
The registry's catch-all category, for sponsors it does not file as a company, a government agency, or a research network.
Who can take part
This study's own entry requirements. Only the study team can say for certain whether you qualify.
Who is studied
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.
- Ages
-
Up to 75 years
- Sex
-
Anyone
- Healthy volunteers
-
Accepted
You do not need to have the condition being studied to take part.
Show the full entry requirements Hide the full entry requirements
Copied word for word from the study's registry entry, so the wording is the study team's rather than ours.
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
Get updates
Get notified about this study
Sign up to get updates when this study changes or when new studies for Neuromuscular diseases are added.
By submitting, you agree to our Terms of use
Conditions
The condition(s) this trial relates to.
As listed by the trial registrant
The condition terms exactly as the trial's registrant entered them.
How to take part
Only the study team decides who joins. These are the ways to reach them.
-
The places running it
1 site. The list below names each one and where it is.
-
The official record
ClinicalTrials.gov lists the study team's own contact details, including names and phone numbers. We don't republish those.
-
A doctor treating you
A doctor who knows your case can contact a study site on your behalf, and can tell you whether this study is worth pursuing at all.
Contacts and locations
Locations
-
Virginia Commonwealth University
RECRUITINGRichmond, Virginia, 23298, United States
More trials for these conditions
Other studies related to the condition(s) this trial covers.
- Can a muscle-boosting antibody help people with spinal muscular atrophy over the long haul?
- Can a diabetes drug curb obesity in kids with movement challenges?
- Can MRI scans reveal how ANO5 muscle disease progresses?
- Smartphone sensors and apps could revolutionize monitoring of rare muscle diseases
- Breathing easy? study probes daily life with respiratory failure
- Nose sensor could replace needle sticks for CO2 monitoring