Collecting data on patients with neuromuscular disorders
Official title: Data Collection of Standard Care of Patients in the EMG Section
Run by National Institutes of Health Clinical Center (CC) · NCT05041387 · Data updated 2026-11-12
This study is collecting information from people with neuromuscular disorders who aren't part of other research to help improve understanding of these conditions and support future studies.
Quick facts
| Study type | Observational |
|---|---|
| Ages | 18 Years to 110 Years |
| Sex | All |
| Enrollment | 200 (estimated) |
| Sponsor | National Institutes of Health Clinical Center (CC) NIH |
| Locations | 1 site (Bethesda, Maryland) |
| Status | Recruiting |
| Started | June 24, 2024 |
| Main results expected | May 1, 2031 |
| Study ends | May 1, 2031 |
| Registry record updated | September 14, 2026 |
| Trial ID | NCT05041387 on ClinicalTrials.gov |
Is this trial a fit for you?
✓Likely a good fit
Ideal candidates are individuals aged 18 and older who are visiting the NIH for evaluation of a neuromuscular disorder.
✕Probably not a fit
Patients who are not experiencing neuromuscular or neurodegenerative disorders may not benefit from this study.
A plain-English reading of the study's rules. Only the study team can confirm whether you qualify.
What this trial studies
This study aims to gather data from individuals with neuromuscular disorders who are not currently enrolled in any NIH studies. Participants will undergo standard neurophysiological tests, including electromyography (EMG), autonomic nervous system testing, and neuromuscular ultrasound as necessary. The collected data will be used to create a repository for future research and to enhance understanding of these disorders. This initiative also supports the training of medical fellows and maintains accreditation for clinical neurophysiology programs.
Why it matters
Potential benefit: If successful, this study could provide valuable insights into neuromuscular disorders, potentially leading to improved diagnosis and treatment options for patients.
How similar studies have gone: Other studies focusing on data collection for rare neuromuscular disorders have shown success in enhancing understanding and treatment approaches, making this a valuable continuation of that work.
Who can join: the full rules
Show full inclusion / exclusion criteria
* INCLUSION CRITERIA: In order to be eligible to participate in this study, an individual must meet all of the following criteria: * The patient or the patient's Legally Authorized Representative is capable of informed consent and signs the consent form. * Male or female, age 18 and over, no age limit * Possible neuromuscular disorder or neurodegenerative disorder. EXCLUSION CRITERIA: No other exclusion criteria for patients
Where it's running
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National Institutes of Health Clinical Center
Bethesda, Maryland, United States Recruiting
Study contacts
- Principal investigator: Tanya J Lehky, M.D. — National Institute of Neurological Disorders and Stroke (NINDS)
- Study coordinator: Candida C Silva
- Email: candida.silva@nih.gov
- Phone: (301) 496-7428
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How to take part
- Review the eligibility criteria above with your treating physician.
- Check the official listing on ClinicalTrials.gov for the latest contact details and recruitment status.
- Contact the study coordinator or principal investigator to ask for pre-screening. Pre-screening is free and never obligates you to enroll.