Fall 2016 Update

 

The Fall 2016 Update will take place in October as usual. This time the Survey will ask a few questions about your MS history in addition to the standard questions. It will also briefly focus on fatigue and your participation in social activities.

 

Enrollment Update

You might wonder why we are asking about your MS history again, since you may recall having already answered such questions at enrollment. The main reason is to update our records for those who enrolled before some of the current questions were included.  Also, we have noticed that in some cases the reported age at diagnosis appears to be the two-digit year of diagnosis instead. 

 

Asking these questions again allows us to verify what was entered at enrollment for everyone and to fill in any blanks or correct potential errors from the first time the questions were asked. 

 

Ensuring that we have accurate answers for these questions allows the rest of your survey responses to be included in the analyses where MS history information is required. Responses to these questions will also allow you to receive invitations to research studies that have specific entrance criteria based on MS history.

PROMIS Scales

NARCOMS typically asks about your level of function in different areas (mobility, hand function, etc.) using the PDDS and the Performance Scales. However, there are several other instruments that can be used to assess your ability to perform specific daily activities. In the upcoming Fall 2016 Update survey, we have included two additional scales, the PROMIS Fatigue and the PROMIS Ability to Participate in Social Roles and Activities. Your responses to all of these scales within the same survey will allow researchers to more accurately compare NARCOMS results to studies that have collected data with the PROMIS scales. 

 

It is important to note that the Performance Scales ask you about the past month and the PROMIS Scales will ask about the prior 7 days. Please answer both as honestly as possible to accurately reflect your situation during the time frame specified. 

 

Thank you very much for your time and continued support of NARCOMS!

 

Should you ever have a question about NARCOMS or an update survey, please call or
email us at: 1-800-253- 7884 (toll-free US) and narcomsnow@narcoms.org.
Thank you for your continued participation!