New study tracks rare muscle-weakening disease to uncover its secrets
NCT ID NCT06078553
First seen Nov 01, 2025 · Last updated May 15, 2026 · Updated 28 times
Summary
This study is for people aged 2 and older with certain rare types of congenital myasthenic syndrome (CMS) caused by specific gene changes. Researchers will collect information from up to 4 visits to track symptoms, medication use, and quality of life. The goal is to better understand how the disease behaves over time, not to test a new treatment.
Disclaimer
Read more
Show less
This is a summary of
the original study
.
Summaries may miss details or leave out important information. Before applying or accepting participation, make sure you have read and understood the full study. Curemydisease.com takes no responsibility whatsoever for anything missed, misunderstood, or acted upon as a result of our summary — we know it does not capture everything.
This is a summary of the original study . Summaries may miss details or leave out important information. Before applying or accepting participation, make sure you have read and understood the full study. Curemydisease.com takes no responsibility whatsoever for anything missed, misunderstood, or acted upon as a result of our summary — we know it does not capture everything.
Get updates
Get notified about this study
Sign up to get updates when this study changes or when new studies for CONGENITAL MYASTHENIC SYNDROME are added.
By submitting, you agree to our Terms of use
Contacts and locations
Show contact details
Enter your email to view the contact information for this study.
By submitting, you agree to our Terms of use
Study contacts
-
Contact
Phone: •••-•••-•••• Email: •••••@•••••
Locations
-
Ann and Robert H Lurie Children's Hospital of Chicago - Main Hospital
RECRUITINGChicago, Illinois, 60611, United States
Contact Phone: •••-•••-•••• Email: •••••@•••••
-
Assistance Publique Hopitaux de Paris - Hopital Pitie-Salpetriere
RECRUITINGParis, 75013, France
Contact Phone: •••-•••-•••• Email: •••••@•••••
-
CHU Bordeaux - Groupe Hospitalier Pellegrin - Neurology
RECRUITINGBordeaux, 33076, France
Contact Phone: •••-•••-•••• Email: •••••@•••••
-
CHU Lille Hopital Salengro - Neurology
RECRUITINGLille, 59037, France
Contact Phone: •••-•••-•••• Email: •••••@•••••
-
CHU Timone
RECRUITINGMarseille, 13385, France
Contact Phone: •••-•••-•••• Email: •••••@•••••
-
Centrum Medyczne Neurologia Slaska - Neurology
RECRUITINGKatowice, 40-689, Poland
Contact Phone: •••-•••-•••• Email: •••••@•••••
-
Fondazione IRCCS Istituto Neurologico Carlo Besta
RECRUITINGMilan, 20133, Italy
Contact Phone: •••-•••-•••• Email: •••••@•••••
-
Hospices Civils de Lyon (HCL) - Hopital Pierre Wertheimer - Neurology
RECRUITINGBron, 69500, France
Contact Phone: •••-•••-•••• Email: •••••@•••••
-
Hospital Sant Joan de Deu - Pediatric Neurology
RECRUITINGEsplugues de Llobregat, 08950, Spain
Contact Phone: •••-•••-•••• Email: •••••@•••••
-
Hospital Sisters Health System (HSHS) - St Elizabeth's Hospital
RECRUITINGO'Fallon, Illinois, 62269, United States
Contact Phone: •••-•••-•••• Email: •••••@•••••
-
Hospital Universitari i Politecnic La Fe
RECRUITINGValencia, 46026, Spain
Contact Phone: •••-•••-•••• Email: •••••@•••••
-
Hospital Universitario 12 de Octubre
RECRUITINGMadrid, 28041, Spain
Contact Phone: •••-•••-•••• Email: •••••@•••••
-
Medical University of Vienna
RECRUITINGVienna, 1090, Austria
Contact Phone: •••-•••-•••• Email: •••••@•••••
-
National Center Hospital, National Center of Neurology and Psychiatry
RECRUITINGKodaira, 187-8551, Japan
Contact Phone: •••-•••-•••• Email: •••••@•••••
-
National Hospital Organization Akita Hospital - Neurology
RECRUITINGYurihonjō, 018-1393, Japan
Contact Phone: •••-•••-•••• Email: •••••@•••••
-
Oxford University Hospitals NHS Foundation Trust - John Radcliffe Hospital
RECRUITINGOxford, OX3 9DU, United Kingdom
Contact Phone: •••-•••-•••• Email: •••••@•••••
-
The Ottawa Hospital - Civic Campus
RECRUITINGOttawa, K1Y 4E9, Canada
Contact Phone: •••-•••-•••• Email: •••••@•••••
-
UC Davis Health - UC Davis Health Midtown Ambulatory Care Center
RECRUITINGSacramento, California, 95816, United States
Contact Phone: •••-•••-•••• Email: •••••@•••••
-
Ulster Hospital
RECRUITINGDundonald, BT16 1RH, United Kingdom
Contact Phone: •••-•••-•••• Email: •••••@•••••
-
Universitaetsklinikum Essen (AoR)
RECRUITINGEssen, 45147, Germany
Contact Phone: •••-•••-•••• Email: •••••@•••••
Conditions
Explore the condition pages connected to this study.