Recruiting

NCT Number: NCT05041387

Data Collection of Standard Care of Patients in the EMG Section

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.

Recruiting

Interested in participating?

Request Info

Key information

Conditions

Neuropathy Autonomic Nervous System Diseases Dysautonomia Muscle Disorders Muscular Diseases Musculoskeletal Diseases Nervous System Diseases Neuromuscular Diseases

Age range

18 year–110 year

Sex eligibility

All sexes

Study type

Observational

Primary location

National Institutes of Health Clinical Center

Bethesda, Maryland, 20892, United States

Location status: Recruiting

Location contact

For more information at the NIH Clinical Center contact Office of Patient Recruitment (OPR)

CONTACT

[email protected]

800-411-1222 ext. TTY8664111010

About this study

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.

Who can participate

Healthy volunteers accepted: No

Only the study team can determine whether someone qualifies for participation.

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

Treatment and study plan

Primary outcomes

To provide a repository of information on enrolled participants to allow for hypothesis generation in future research.

Time frame: 10 years

Results of patient's studies will be tabulated.

Study contacts

Contact information is provided by the study sponsor or research team.

Candida C Silva

CONTACT

[email protected]

(301) 496-7428

Tanya J Lehky, M.D.

CONTACT

[email protected]

(301) 496-7428

Sponsors and collaborators

Lead sponsor

National Institute of Neurological Disorders and Stroke (NINDS)

Nih

Registry information

Important dates

Study start: 2024
Primary completion: 2031
Study completion: 2031
First posted: Sep 13, 2021
Registry last updated: Mar 10, 2026

OpenTrials presents study information sourced from ClinicalTrials.gov. The official registry record should be consulted for the latest information.

View the official ClinicalTrials.gov record (opens in a new tab)

This listing is for discovery and informational purposes only. It is not medical advice, does not guarantee that a study is recruiting, and does not determine eligibility. Contact the study team and a qualified healthcare professional when considering participation.

Published trials that share one or more normalized conditions with this study.

Completed