Most people with Lupus (SLE) get
their medical care from their primary care physician or
rheumatologist. Yet, most research about lupus is performed
in university centers where only a small minority of people
get their care, and almost no research about lupus involves
the majority of people who have the condition. However, the
NDB research project addresses lupus as it commonly occurs
or what we call, "Lupus in the Community"; (SLEC). People in
this wider community may have lupus that is different and
may experience outcomes that are different from what are
seen at university centers.
NDB research is concerned with
important issues for people with SLE: which treatments are
most effective, symptoms, side effects and long
term-outcomes. In addition, we are interested in medical
costs, quality of life, ability to work and function, price
of medications and the extent to which medical treatments
actually improve people.
NDB research adds a human touch to
the important basic science and immunology work performed at
university centers.
NDB performs its research primarily
by getting information from people who have SLE. We do it by
mailed questionnaires or secure online web forms.
If you have lupus, we need your
help.
What’s in it for you?
Primarily, the knowledge that you
are helping research that expands knowledge about lupus and
its treatments and outcomes. NDB publishes a news letter
that will be sent to you, and NDB can answer some general
questions that you might have about SLE. And we will show
you the research when it is published.
NDB is on the up and up. We don’t
sell anything. We don’t advocate specific treatments. We are
non-profit. We publish our research in major medical
journals. All of your data is always absolutely
confidential.
How much time does it take to
participate?
About an hour twice a year.
Who and what is the NDB?
We are a well-regarded research
group whose work in the last few years has been primarily
about rheumatoid arthritis. We are now also focusing on
lupus. We have a lot of good credentials. Click here to see
who we are.
-
Click
here for Español or International English (if you
live outside of the US).
How to get started:
- Visit our enrollment page.
You'll be asked to provide consent to participate in the
research.
- The consent form will explain
how we respect your privacy, and how the information you
provide will be used.
- After consenting, you'll begin
the enrollment forms. We'll ask for your contact
information, your doctor's contact information, and
other ways we can reach you if necessary. We may need to
contact your doctor to confirm your diagnosis.
- Then you'll move on to four
pages of questions about your condition, which
medications you are taking and have taken in the past,
and your general state of health.
- That's it. You're almost done.
Look in your email for confirmation of your enrollment.
- Once you have completed the
enrollment form, you are now ready to start! We will
contact you every 6 months in January and July with an
email link to the online Lupus Webquest. Depending on
when you signed up, it may be a few months before you
receive your first email with the Lupus Webquest link.
- If you use a service like
Yahoo, AOL, Earthlink or other web-based email services,
please add webquest@arthritis-research.org to your
e-mail address book. Doing so will let your service know
that we are not sending you spam. Thanks!
Click here to Enroll Now!
See our
Frequently Asked Questions for more information
