Frequently Asked Questions

 

What is the Myasthenia Gravis (MG) Patient Registry?

The MG Patient Registry is an active database of persons with MG, developed for the purposes of research, treatment, and patient information.  The MG Patient Registry is internet/web-based.  It is a confidential and patient-driven research project, funded by the Myasthenia Gravis Foundation of America (MGFA), managed by the MGFA and the Coordinating Center of the University of Alabama at Birmingham (UAB) with oversight by the MGFA Patient Registry Committee.

 

What internet settings are required for participating in the registry?

  • A good, reliable internet connection.
  • A recent version of an internet browser such as Internet Explorer (at least version 8), Firefox, Safari, or Google Chrome.  To determine what version internet browser you are running, click on the “help” button of your browser menu; then click “About Internet Explorer” (or whatever browser you are using).  This should give you the version number.  The system has also been tested with browsers in an iPad and browsers in an android tablet and android phone. 
  • Visual style may vary from one browser to another, but the basic functionalities will be present. 

 

Can I get a copy of the MG Registry survey?

On-line registration is required and includes a consent (permission) step to get started and to gain access to the enrollment and subsequent surveys.  Once a person has completed the registration process, the participant will have access to print a blank survey. 

 

Can persons with limited internet access participate in the Registry?

As previously noted, on-line registration is required and includes a consent (permission) step to get started and to gain access to the enrollment and subsequent surveys.  After enrolling, participants can print a blank copy of the full survey from the Registry, complete the paper copy at whatever pace is comfortable (from completing within a few hours to within a few weeks, etc.), and then go back to the website to enter personal information and submit it.  Some MG Chapters have discussed meeting and collectively assisting with the on-line entry of survey information.  Alternatively, some have suggested that a family member can assist with registration and completion of surveys.
 
Please do not mail a completed paper survey to the Data Coordinatng Center.  A participant's data is maintained under their personal, password protected account.  The Data Coordinating Center has no means by which to access accounts to provide data entry on behalf of a participant. 

 

What types of questions are in the enrollment survey?

  • General contact information
  • Demographic information, for example, education, employment, income, insurance
  • Year, month, and place of birth of parents and grandparents
  • Information on places you lived when you were under 25 years old
  • MG medical history, including tests and diagnoses; treatments; other conditions; family's MG history
  • Information on quality of life and lifestyle
  • Future, follow-up surveys will contain a subset of the enrollment questions as well as one new section of questions.
It is important that each survey question be answered to be able to submit the survey and fully enroll.  We recognize there are times when you simply may not have specific information, and we have tried to provide ways for you to indicate these cases for most items (for example, by answering “unsure” or “unknown”, or by entering a comment related to an item).  At the very end of the survey is a ‘comments’ section.

 

How long will it take to complete the survey?

  • The actual amount of time required to complete the enrollment survey will vary from one participant to another depending on availability and accessibility to survey information.  Examples include your medical history and perhaps your family’s medical history, which may or may not be readily accessible. 

  • All surveys can be completed at your own pace.  Once you have completed the registration/ enrollment process (described below), you may log on and off the MG Registry website as often as needed to enter the survey information, before submitting it in its final form (i.e., when you have entered as much of the survey information as you can or intend).

  • The enrollment survey is expected to take longer to complete than follow-up surveys.

 

How do I enroll in the MG Registry?

  1. Enrolling in the MG Registry is an internet-based process.  
  2. You must read and agree to the Terms and Conditions of the registry to participate.
  3. You will be asked to provide an active email address.  The email address is used (1) to provide you with email notification when your user account has been set up, (2) to authenticate your user account, and (3) to notify you when future survey updates are available for you to complete on the MG Registry website.
  4. You will be asked to select a username and password.  You will use both to log-in and access your personal survey in the Registry. Please note, your username and password can be anything you choose, barring those that are already taken.  You are NOT required to use your personal name for your usernameBe sure to record your username and password in a safe place, as you will be required to enter it every time you log on.
  5. Once you complete the registration page, you will receive a "Welcome" email message confirming that you have completed the registration process.  This message will be sent to the address you used to register.
  6. Once you register, you will also have access to the enrollment survey.
  7. When the enrollment survey has been entered and submitted within the website, you are fully enrolled in the MG RegistryPlease note, you MUST click the button "Submit My Survey" to complete this process.  Until this step is completed, your survey is considered pending. 

 

What if I did not receive an email verifying my registration?

If you did not receive a Welcome email verifying your registration in the MG Registry, please check your “junk” email folder or check for an email message notifying you of SPAM email.  Email administrators often flag as junk mail, those incoming messages that contain “welcome” or other designated terms in the subject line.  If you are unable to locate a welcome email, you can try to log-in to the Registry by entering your username and password.  If successful, you will be directed to the MGR User Homepage (see Figure 1.0  below).  You may contact us at MGR@MGregistry.org for additional help.

 

How do I log-on to the MG Registry to access my survey?

  • When you initially complete the registration process, you will be automatically directed to the MG Registry user home page.  From there you click on the link “My Enrollment Survey”.
  • As part of the registration process, you are setting up a personal, user account in which your survey data is kept.  For data security purposes, when there is no activity in your survey (i.e., no typing of information or movement from one page to another) for 20 or more minutes, your session will time-out and you will have to log-in again in order to re-access your information. 
  • To log-in, go to the log-in web page:  https://mgregistry.soph.uab.edu/MGRegistry/PortalLogin.aspx; enter your username and password; identify the picture/object you see by selecting its name from the dropdown list; then click “Login”. 

 

How do I navigate the MGR Registry once I have completed enrollment? 
 

Figure 1.0 below shows a view of the “MGR USER HOMEPAGE”.  After logging on, you are directed to this page.  The homepage menu (i.e., the blue bar extending across the page, just under “MGR USER HOMEPAGE”) provides the following links:

  • User Home - returns you to the view shown in Figure 1.0
  • User Settings - where you can change your password and update your email address and your name; usernames cannot be changed
  • Print Blank Survey - access to a PDF of the full-printable survey
  • Print My Data - functions to print selected survey sections including your data
  • Log Out - where at any time, you can log out of the Registry
Figure 1.0
  • If you have not yet begun to enter information in your survey, your homepage will show the link “My Enrollment Survey”. 
  • If you have begun to enter information in your survey, your homepage will show a link “Return to my Enrollment Survey” (as seen in Figure 1.0). 
  • If you have completed and submitted your survey, your homepage will show the following message:   “You have completed the Survey.  Please check back later for Updates.“ 

When follow-up surveys become available for your completion, you will receive an email from the Registry.  At that time you can log on to the website and click the link provided to access the latest available survey.

 

What if I leave the website too long and get logged out?

If your session times out, you need only to go back to the login web page:  https://mgregistry.soph.uab.edu/MGRegistry/PortalLogin.aspx; reenter your username and password; identify the picture/object you see by selecting its name from the dropdown list; then click “Login”.  For data security purposes, when there is no activity in your survey (i.e., no typing of information or movement from one page to another) for 20 or more minutes, your session will time-out and you will have to log-in again in order to re-access your information.