Frequently Asked Questions | Pediatric Myasthenia Gravis Consortium

What is the purpose of the Peds MG Consortium?

Myasthenia gravis (MG) is a disease of the neuromuscular junction that leads to fluctuating muscle weakness, which can affect breathing as well as use of limbs, chewing, swallowing and vision problems. It can be transient, passed on by maternal antibodies to the fetus, genetic mutations, or be an acquired, autoimmune form, known as juvenile myasthenia gravis (JMG). Diagnosis and treatment is based on experience with adults with the acquired form (aMG).

PMGC Registry will collect information about pediatric-onset myasthenia gravis, both acquired and congenital forms to better be able to diagnose patients, develop new tools for diagnosing and managing patients, and determine best practices for management. This will also provide a database of patients with this rare disease from which to recruit for future clinical trials as well as provide a base to determine best outcomes to use in these trials.

Does it cost anything to sign up?

Are participants financially reimbursed?

What kind of data is collected from participants?

Where will this data go and who can access it?

Data will be entered into the secure web-based portal. The portal and associated data storage systems are protected by firewall and intrusion detection systems, in addition to network and application-level security features. All patient information entered into the portal is protected by appropriate security. Authorized personnel will include the Principal Investigator and clinical research coordinator responsible for this study.

Can I withdraw from participation at any time?

How do I sign up?

The participant must be seen at one of the following 6 pediatric centers:

UCSF Benioff Children's Hospital
Ann & Robert H. Lurie Children’s Hospital of Chicago
Children’s Hospital of Philadelphia
University of California, Davis
University of Rochester
UT Southwestern

♦ To request an appointment with Dr. Strober at UCSF Benioff Children's Hospital, click here.

♦ If the participant is already a patient at one of these centers, or is interested in being seen at one of these centers to enroll in this registry, please email us.

Note: For participants who are under 18 years of age, they may be required to sign an assent form and their parent/legal guardian/authorized representative will be required to sign a consent form.