Tuula Tyry, PhD, MAED,
NARCOMS Program Manager

Introduction
As of March 2005 the total number of participants enrolled in the NARCOMS MS Patient Registry was well over 30,000 (see Figure 1). The spring 2005 update survey is scheduled to be sent by mail or via a secure Web site to over 22,000 active participants in early April. Hopefully you have already responded to the survey by the time you are reading this, but if not we encourage you to return the survey at your earliest convenience.

The response rate has been around 43% in the last three updates and we are hoping to beat that rate this time around. However, while it is very important to get as many responses back as possible, it is also important to have each of the questions answered––even when there has not been any change since the previous update. Why? The large size of the registry usually allows us to conduct cross sectional analyses even when some of the responses are missing. However, there is a growing need for true longitudinal analyses, where the data provided by each individual is compared against his or her own data submitted at different times during the course of the disease.

Unfortunately, when a crucial part of the dataset is missing the rest of the data sequence may have to be omitted from that particular analysis as well. Since we can not assume that a missing answer means no, we encourage you to clearly indicate for each question which option applies. However, even partial datasets are much better than none, so please do what you can and keep them coming!

Figure 1. Distribution of NARCOMS registry members in the United States by state.

Standard Questions
As most of you have noticed by now, all the update surveys begin with the same set of standard questions (e.g. health and quality of life survey, relapse information, MS symptom status, patient determined disease steps [PDDS], and performance scales). In fact, the same scales and questions are included in the enrollment questionnaire as well. Collecting data over a period of several years at 6-month intervals using the same instrument allows us to track even subtle trends in corresponding disease and disability status indicators.

In statistical analyses the data from this section of the surveys can be used either as independent variables or dependent variables or to stratify the data. For instance, before analyzing the data we may divide the participants in different groups based on the PDDS score they have reported (PDDS is used for stratification), we may compare the health survey responses across the different PDDS scores reported (PDDS score is used as an independent variable) or we can track the PDDS scores across the time (PDDS is used as a dependent variable). Relapse related data can be used in a similar fashion, but these questions also serve as important inclusion criteria for most of the clinical studies looking for participants. To summarize, the data from this section of the update surveys are used in one way or another in almost every analysis as well as in facilitating clinical trial recruitment.

Therapy-Related Questions
The questions on immunological and symptomatic therapies have evolved quite a bit over the years. Keeping the lists of options current and comprehensive and still reasonably short has proven quite challenging. We monitor all the entries given in the open text field and review them prior to compiling the list of options for the next survey. Medical experts in the field, however, are consulted before any new options are added. We realize that for many of you this section may be the most tedious part of the survey to complete and truly appreciate your taking the time and effort to do it. You may notice that we have already revised and simplified some of the tables based on your suggestions. Further comments are welcome!

Rotating Questions
The questions in this section of the survey reflect current research interests or new hypotheses or may revisit earlier lines of research. As you can imagine, there are a tremendous number of topics waiting to be included. In order to keep the survey short enough for most participants to complete all of it, we are usually limiting this section to two pages. If the response rate for a particular survey is low, we may need to include the same questions again in another survey, hoping to reach additional participants that way. With the growing enrollment and climbing response rate, however, we are usually eliciting a large enough number of responses to each question for us to move on to a new topic in the next survey.

Demographic and Other Non- Clinical Update Questions
The questions in this section help us to update and unify the datasets that we have collected over the years. Occasionally we need to repeat some of the questions that were asked at the time of enrollment. As an example, we are in the process of reclassifying the entries for race and ethnicity to match the definitions currently used in the U.S. Census surveys. Please bear with us and respond to these repeated “background” questions, as many researchers are required to include the demographics of the subjects in their reports or to compare their findings to those obtained in the U.S. Census population.

Conclusion
Enrollment in the NARCOMS MS Patient Registry is steadily moving towards the goal of the database representing at least 10% of the MS population in the US. Although reaching the level of 35,000 to 40,000 participants remains an important goal for the program, we are also increasing our efforts in retaining the participants. We have recently enhanced and simplified the online access to updates and are working hard to maintain the accuracy of mailing addresses to ensure that we consistently reach as many participants as possible. In addition to these measures we are also a planning a more detailed longitudinal study, similar to the Harvard Nurses study that you may have heard about. The participants in this additional study would be expected to complete more detailed surveys and more frequently than with the current study which will continue in the same format as in the past. We will provide more details on this plan in the upcoming reports.

NARCOMS in Numbers
For this issue we have selected questions relating to the topics of the featured articles. Thank you for all of you who have provided questions and comments. Q1. What does the database tell about the use of vitamins and supplements?

A1. We have asked about non-prescription medication use in several update surveys. No data has been published yet, but a series of analyses will be completed once the spring 2005 update results become available. The table above is based on responses to the Fall 2004 update. It demonstrates that although men are slightly less likely to use any of the listed non-prescription medications, the percentages are remarkably similar for men and women. Overall, the results were similar in the Spring 2004 update survey (not shown here).

Q2. What does the database show about fatigue?

A2. In the Fall 2004 update survey over 90% of respondents reported higher than normal levels of fatigue on a performance scale from 0 to 5. However, about one third of the respondents considered their fatigue to be minimal or mild. Men reported somewhat higher levels of fatigue than women.

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This entry was posted on Saturday, July 16th, 2005 at 7:41 pm and is filed under All Articles, NARCOMS. You can follow any responses to this entry through the RSS 2.0 feed. Both comments and pings are currently closed.