Neuromuscular Diseases Clinical Trial
Official title:
Feasibility of Engaging and Capturing Undiagnosed Myasthenia Gravis Participants Through a Social Media Campaign Paired With a Self-moderated Assessment
This is a fully remote, site-less, prospective, observational study enrolling adults in the United States (excluding U.S. territories) with undiagnosed neuromuscular symptoms. The main study objective is to evaluate the feasibility of a social media recruitment campaign tied to a participant reported symptom survey and self-administered physical assessment tool to influence undiagnosed participants to seek care for suspected Myasthenia Gravis (MG).
Participants with undiagnosed neuromuscular symptoms will be targeted via social media paid advertisements to recruit them to our study landing page (weblink: https://bit.ly/unearthrootcause). Two assessment tools were developed by the study team: the Impact of Daily Living (IDL) Survey and the MG Exercise Assessment. Both tools were designed using supporting literature, accepted guidelines, and a rigorous review via a panel of practicing neurologist key opinion leaders experienced in treating MG patients. Adult participants who don't have specific diagnosed neurologic conditions will first be screened for eligibility based on the results of the IDL survey which will query participants on the presence or absence of habits/symptoms characteristic of MG. Those who qualify will complete the MG Exercise Assessment in which participants are provided video instructions to perform a series of 10 physical tests to examine if specific muscle groups undergo inducible fatigue. The results of the MG Exercise Assessment are reviewed by a neurologist to determine if participants would benefit further from an in-person neurologist evaluation for MG by a provider. Each participant is provided with a report of the neurologist's evaluation. Participants will be followed for 1 year through bimonthly communications to determine if and when they followed up with a clinician and if they received a confirmed diagnosis of myasthenia gravis. ;
Status | Clinical Trial | Phase | |
---|---|---|---|
Active, not recruiting |
NCT03548779 -
North Carolina Genomic Evaluation by Next-generation Exome Sequencing, 2
|
N/A | |
Completed |
NCT04435093 -
Digitalization Playful Module of Motor Function Measure Assessment for Children With Neuromuscular Disorders, MFM-Play Pilot Study.
|
||
Not yet recruiting |
NCT04089696 -
Validation of the "ExSpiron©" in Patients With ALS
|
N/A | |
Not yet recruiting |
NCT05785546 -
Elaboration of a Pronostic Score of Changes on Wheelchair's Seating System
|
||
Completed |
NCT01313325 -
Hippotherapy to Improve the Balance of Children With Movement Disorders
|
N/A | |
Recruiting |
NCT04098094 -
Outcomes of RV Dysfunction in Acute Exacerbation of Chronic Respiratory Diseases
|
||
Active, not recruiting |
NCT05070624 -
The Peer Support Study
|
N/A | |
Completed |
NCT04729920 -
Home Use of Mechanical Insufflation/Exsufflation Devices in Neuromuscular Diseases
|
||
Recruiting |
NCT04581577 -
Perceptions of the Clinical and Psychosocial Impact of Covid-19 in Patients With Neuromuscular and Neurological Disorders
|
||
Completed |
NCT06428864 -
Effect of the Use of a 3D Scanner Application on a Smartphone to Mold Garchois Orthotic Device in Neuromuscular Diseases Patients With Scoliosis
|
||
Enrolling by invitation |
NCT05539456 -
Reliability and Validity of the Turkish Version of the PedsQL 3.0 Neuromuscular Module for 2-to 4- Year-old
|
||
Completed |
NCT05353738 -
Efficacy of Vaccination Against COVID-19 in Patients Presenting a Neuromuscular Disease With Severe Amyotrophy
|
||
Recruiting |
NCT04541602 -
Detection of Neuromuscular Complications in Critically Ill Patients
|
||
Completed |
NCT03394859 -
Electronic Medical Records and Genomics (eMERGE) Phase III
|
||
Enrolling by invitation |
NCT05099107 -
Changes of Motor Function Tests in Congenital Myopathy Subjects Treated With Oral Salbutamol as Compared to no Treatment
|
N/A | |
Completed |
NCT05070910 -
NDT Effectiveness Study
|
N/A | |
Recruiting |
NCT04100993 -
Multisystem and Autonomic Complications of NMD on Long-term NIV
|
||
Recruiting |
NCT04986059 -
Effects of Pre-event Massage on Muscle Activity
|
N/A | |
Completed |
NCT01022931 -
Epidemiology and Clinical Presentation of H1N1 Infection in Children in Geneva
|
N/A | |
Terminated |
NCT03353064 -
Telemedicine for Improving Outcome in Inner City Patient Population With Hypercapneic Respiratory Failure
|
N/A |