NARCOMS: Researchers need YOU
Total enrollment in NARCOMS
from 1996 to 2011
To really understand multiple sclerosis, you have to
talk to people who have it.
Researchers who are tackling
difficult questions about the
disease are no different—except
they need to talk to thousands
of people about it. In 1993,
the Consortium of Multiple
Sclerosis Centers (CMSC)
recognized this need and created
a registry called NARCOMS
(the North American Research
Committee on Multiple
Sclerosis), to capture the
experiences of people living with
MS.
In the 20 years since
NARCOMS’ inception, more
than 36,000 people have
joined the registry. But more
participants are needed right
now to help it grow and become
even more representative of
people with MS. In 2012 alone,
researchers used data from the
registry participants to report on
mobility impairment, walking
speed, quality of life, disease
progression, genetics, overactive
bladder, vertigo and many other
topics to help express the MS
experience.
Mellen Center for Multiple
Sclerosis—received funding
from the National MS Society
to look at people’s views on
the risks involved in newer MS
therapies, such as the possibility
of developing the brain disease
PML from using Tysabri.
Dr. Fox and his colleagues
administered a survey on the
topic to 5,446 people from
the NARCOMS registry and
then repeated the survey one
year later. Team members have
found, not surprisingly, that
people who are more severely
disabled by MS are willing to
take higher risks with therapies.
Interestingly, tolerance to risk
shifted over time, with more
than one-fifth of respondents
becoming less willing to tolerate
risks over the one-year period.
These results suggest that
patients’ acceptance of the risk
of MS therapies is subject to
change and may require ongoing
discussions with healthcare
providers.
This study and many others
using data from NARCOMS
are being used to improve our
understanding of life with MS
(Abstract #P986, ECTRIMS
2012).
10,000
15,000
20,000
25,000
30,000
35,000
40,000
35,906
31,703
21,806
0
5,000
1996
616
2001
2006
2011
NARCOMS studies risk tolerance
In just one example of the
research that NARCOMS is
facilitating, Dr. Robert Fox—
the current managing director
of NARCOMS and medical
director at the Cleveland Clinic’s
How do you sign up?
Anyone with a diagnosis of MS
can participate in NARCOMS
and contribute to research
studies. Participants are asked
to complete an enrollment
questionnaire, and then update
surveys twice a year. Surveys take
about 45 minutes to complete
and can be filled out online or
in print.
