CIMR Neuromuscular Research Biobank
NRB-0001
Center for Inherited Muscle Research Neuromuscular Research Biobank
NRB-0001
Center for Inherited Muscle Research Neuromuscular Research Biobank
Sponsor study identifier
observational
500
1 country
1
Study Start
March 17, 2021
Actual (reported)Primary Completion
January 2030
EstimatedPlanned date reported by the registry; this milestone is not confirmed as achieved.
Study Completion
February 2030
EstimatedPlanned date reported by the registry; this milestone is not confirmed as achieved.
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.
Registry-reported information. Elapsed time and enrollment totals alone do not measure study progress or recruitment pace.
February 2030
EstimatedPlanned date reported by the registry; this milestone is not confirmed as achieved.
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Dates and qualifiers reported by the registry. Estimated dates do not confirm that a milestone has occurred.
March 17, 2021
Actual (reported)June 21, 2022
Actual (reported)June 28, 2022
Actual (reported)January 2030
EstimatedPlanned date reported by the registry; this milestone is not confirmed as achieved.
February 2030
EstimatedPlanned date reported by the registry; this milestone is not confirmed as achieved.
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
To collect medical history information from subjects with all types of neuromuscular disease and healthy controls.
Baseline
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.
Virginia Commonwealth University
Richmond, Virginia, 23298, United States
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.
Nicholas E. Johnson, MD
Virginia Commonwealth University
First Submitted
June 21, 2022
First Posted
June 28, 2022
Study Start
March 17, 2021
Actual (reported)Primary Completion
January 2030
EstimatedPlanned date reported by the registry; this milestone is not confirmed as achieved.
Impact of Covid-19 Pandemic on Children With Neuromuscular Disease and Their Parents in Turkey: Parent Perspective
Contact the study team to confirm eligibility.
Study Completion
February 2030
EstimatedPlanned date reported by the registry; this milestone is not confirmed as achieved.
Last Updated
July 6, 2026
Record last verified: 2026-07
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Source: ClinicalTrials.gov.
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