Collecting data on patients with neuromuscular disorders
Data Collection of Standard Care of Patients in the EMG Section
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 |
|---|---|
| Enrollment | 200 (estimated) |
| Ages | 18 Years to 110 Years |
| Sex | All |
| Sponsor | National Institutes of Health Clinical Center (CC) NIH |
| Locations | 1 site (Bethesda, Maryland) |
| Trial ID | NCT05041387 on ClinicalTrials.gov |
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.
Who should consider this trial
Good fit: Ideal candidates are individuals aged 18 and older who are visiting the NIH for evaluation of a neuromuscular disorder.
Not a fit: Patients who are not experiencing neuromuscular or neurodegenerative disorders may not benefit from this study.
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 performed: 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.
Eligibility criteria
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 this trial is running
Bethesda, Maryland
- 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
How to participate
- Review the eligibility criteria above with your treating physician.
- Visit the official trial page on ClinicalTrials.gov for the most current contact information and recruitment status.
- Contact the listed study coordinator or principal investigator to request pre-screening. Pre-screening is free and never obligates you to enroll.