National Databank for Rheumatic Diseases

Table of Contents

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).

1. Visit our enrollment page. You'll be asked to provide consent to participate in the research.
2. The consent form will explain how we respect your privacy, and how the information you provide will be used.
3. 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.
4. 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.
5. That's it. You're almost done. Look in your email for confirmation of your enrollment.
6. 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.
7. 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