An observational study in Neuropathy, Muscle Disorders and Dysautonomia, sponsored by National Institute of Neurological Disorders and Stroke (NINDS). Recruiting at 1 site in United States. Open to participants aged 18 Years to 110 Years. Per ClinicalTrials.gov, last updated 2026-09-14.
Sponsored by National Institute of Neurological Disorders and Stroke (NINDS) · Observational
Background:
Most people who are referred to the EMG (Electromyography) Section of the NIH are enrolled into specific active studies. This allows researchers to learn about a range of rare neuromuscular disorders. But study criteria may not give researchers the chance to evaluate a single person or study a common symptom. Therefore, researchers want to assess people with neuromuscular disorders who are not currently enrolled in any NIH studies. They will perform tests on these individuals in the EMG Lab. Then they will create a repository of data that may be used for future research. This will help them learn more about these disorders.
Objective:
To retain data that is collected as part of participant visits to the NIH.
Eligibility:
People aged 18 and older who will be visiting the NIH for evaluation of their neuromuscular disorder.
Design:
Participants will be screened with a medical record review.
Participants will have a physical exam. They will be evaluated for their neuromuscular disorder. They may have tests to learn more about how their nerves and muscles work that are called nerve conduction and EMG studies. Their muscles and nerves may be assessed with an ultrasound. Their ability to sweat may be measured. Their heart rate and blood pressure may be taken. Changes to their breathing or changes in their body position may be measured.
Participant data will be given a unique numerical identifier that can be used if the data is shared. Data will be stored on a server and in a database.
Participants will have 1-2 visits. Each visit will last less than 4 hours. They may be contacted for a follow-up visit....
Study Description:
This protocol is designed to create a repository of information for future hypothesis generation. We will be evaluating patients with neuromuscular disorders that are not currently enrolled in any NIH protocols with procedures performed in the EMG Lab. The procedures include standard neurophysiological studies of EMG, autonomic nervous system (ANS) testing, and neuromuscular ultrasound (NMUS) as deemed necessary for appropriate diagnostic and clinical status testing. This will allow us to investigate into the problems of these patients with the purpose of furthering general knowledge of neuromuscular disorders and enhancing our EMG capabilities. Our ability to evaluate patients with a wide variety of neuromuscular diseases is also critical to maintaining our accreditation with the clinical neurophysiology fellowship programs and training our fellows to be competent physicians, as well as for keeping all staff, including senior staff, up-to-date and familiar with the evaluation of patients with a wide spectrum of diseases. We may also be able to later refer these patients into treatment protocols or re-evaluate patients that are no longer in an active NINDS protocol. This protocol will be valuable resource to the community by engendering greater interaction with the local neurologists and clinics as well as providing certain types of neurophysiological testing that are not readily available in the community.
Objectives:
To create a repository of information on enrolled participants to allow for hypothesis generation in future research
To add value to the Clinical Neurophysiology training programs by providing consult, diagnostic tests, and medical follow-up of participants
Endpoints:
To create a repository of information on enrolled participants to allow for hypothesis generation in future research.
232 studies on the registry are indexed under Muscular Diseases; 54 are open to participants now.
This study's planned enrollment of 200 is above the median of 95 across 85 observational studies indexed under Muscular Diseases.
Browse Muscular Diseases studies →National Institute of Neurological Disorders and Stroke (NINDS) is the lead sponsor of 601 studies on the registry; 56 are open to participants now.
Of its 18 completed or terminated interventional studies of FDA-regulated products, 8 (44%) have results posted.
Counted across the registry records on this site, refreshed daily.
The patients will be referred by physician, clinic or may be self-referred.
Go through the criteria one by one — yes, no or not sure — and take the list to your doctor or the study team. Kept in this browser only.
In order to be eligible to participate in this study, an individual must meet all of the following criteria:
EXCLUSION CRITERIA:
No other exclusion criteria for patients
Underlined terms in the criteria open these too. Explained by clinicaltrials.gg, not part of the registry record. The study team decides who can take part.
Before you join, the study team explains what taking part involves — its purpose, what happens, the risks and possible benefits — and answers your questions, so you can decide freely. Consent is usually recorded on a form (the informed consent form, ICF) signed by you or, where the law allows, by someone legally authorised to decide for you.
You can keep asking questions during the study, you are told of new information that matters, and you can choose to leave at any time.
Informed consent
Before you join, the study team explains what taking part involves — its purpose, what happens, the risks and possible benefits — and answers your questions, so you can decide freely. Consent is usually recorded on a form (the informed consent form, ICF) signed by you or, where the law allows, by someone legally authorised to decide for you.
You can keep asking questions during the study, you are told of new information that matters, and you can choose to leave at any time.
Explained by clinicaltrials.gg, not part of the registry record. The study team decides who can take part.
Patients with neuromuscular disorders, no specific diagnosis
To provide a repository of information on enrolled participants to allow for hypothesis generation in future research.
Results of patient's studies will be tabulated.
Time frame: 10 years
Plan to share: Yes — The individual participant data will be shared with the referring physician and any other person the participant requests. The individual participant data will not be shared with anyone not involved in the care of that participant.
Supporting information: Clinical study report
Time frame: As mentioned above, IPD will only be shared with the referring physician.
Access criteria: No analysis or general data will be shared.
Started Jun 2024 (actual). Primary completion is estimated for May 2031, 82 months after the start.
Of 36 observational studies under Muscular Diseases, half reached primary completion within 75 months of starting (the median), counting those still running; a quarter within 20 and three quarters within 159. This study's planned 82 months is close to that.
How these figures are worked out, and which studies are left out of them.
Eligibility is decided by the study team. Share this record with your doctor or contact the team directly.
Contact study teamGet an email when the registry record changes — status, dates, results — or when someone posts here.
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Nothing here yet. If you are running this trial, taking part in it, or weighing whether to, this is the place to say so.
National Institute of Neurological Disorders and Stroke (NINDS) →