Thank you to the registry participants who have contacted us and given us feedback about the NARCOMS Registry. Your continued support and feedback help us to improve the survey content and how the online users interact with the updates. The recent relocation of the NARCOMS Coordinating Center means a few changes to the NARCOMS Update surveys. Here’s a preview of what will be a bit different.
How will you get the survey?
Paper Updates: You will continue to receive the paper survey via the US Postal Service. The only change you will notice is the new return address that appears on the survey and the return envelope. The surveys will now be mailed back to St. Louis, Missouri.
Online Updates: The survey invitation you usually receive by email will now contain a direct link to your individual survey. All you need to do is click on the link, and it will take you directly to your survey. You will fill out the survey like you normally do, click submit, and your survey will be complete.
What is new online?
For those of you that complete the updates online, we are happy to announce some new and exciting changes! We think they will make the survey easier to access and easier to complete:
No more login or password! You will no longer need to remember a login name or a password. Your survey and link are unique to you. They will be accessed through a secure, individualized link emailed to you.
Updating your contact information: If you need to update your contact information, you can easily do that within the survey. Outside of survey time, you can report address changes to MSRegistry@narcoms.org or call 1-800-253-7884 (toll free US).
How to Take a Break: If you need to take a break while filling out your survey, you will be given a code so you can pick back up where you left off. All you have to do is click “Save & Return” at the bottom of each screen, and your return code will appear (see box).
Remember: The code to return to the survey will not be in the email (to protect your privacy) – you will need to record the code to use later
Are you Taking an MS Therapy?
This is the most noticeable improvement to the online survey. Thanks to you and your comments, the process is now much easier! We will now provide you with a list of therapies, also called disease modifying therapies or DMTs, that you may have taken in the past six months.
What if I am NOT taking a medication? At the bottom of the list of medications, simply check, “I have not taken any of the above therapies over the past 6 months” and press “Next Page>>” to go to the next question.
What if I am taking a medication? Read the list of medications and select the medications you have taken in the prior 6 months and press “Next Page>>” then provide additional information only for those particular medications.
Do you have Other Conditions?
Just like the way you tell us about your DMTs, you’ll be asked if you have any other medical conditions.
You have other conditions: If you have any on the list, check “Yes” and “Next Page>>”. You will then tell us which of the conditions you have and if you are currently being treated for them.
You do NOT have other conditions: Just check “No” and press “Next Page >>” to go to the next question.