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. Can you help? Will you help?
See our Frequently Asked Questions for more information.